WE KNOW THE WAY OUT: CREATING ONLINE INFLAMMATORY BOWEL DISEASE COMMUNITIES By DENNIS OWEN FROHLICH A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS F OR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2014
2014 Dennis Owen Frohlich
To everybody with Inflammatory Bowel Disease
4 ACKNOWLEDGMENTS I could not have completed this dissertation or my graduate studies without the support and encouragement of many people. I thank my professors and mentors from North Dakota State University who helped me complete my master s program and put me on the path to a Ph.D. These include Stephenson Beck, J ohn Helgeland, Robert Littlefield, Zoltan Madjik, Mark Meister, Paul Nelson, Carrie Anne Platt, and my adviser, Nan Yu. They set me up for success, and I arrived at the University of Florida well prepared to continue my studies. I thank my committee membe rs Sharon Abramowitz, Lisa Duke Cornell, and Debbie Treise for their guidance and support in class and with my dissertation. Their suggestions on how to improve my dissertation were greatly appreciated. I thank my adviser, Kim Walsh Childers, most of all f or her help throughout every stage of this program. She invested time in my studies and provided valuable advice, not only on my research, but my career path as well. My time at UF has also been greatly assisted by the Graduate School office staff, include Jody Hedge, Kim Holloway, and Sarah Lee. A special thank you is in order for Najla Amundson, an undergraduate professor of mine from NDSU. After I graduated Najla continued to stay in contact and was the only person to suggest I apply to graduate school to pursue a program in health communication. At the time, I did not know what health communication was or what a graduate degree would entail. She planted a seed, and five years later her suggestion has come to fruition. I do not know where I would be now had I not gone to graduate school, but I am appreciative of the journey thus far, and I am so glad I took her advice and applied to NDSU.
5 Thank you to all my friends who have encouraged me over the years. All my friends from before my graduate studies beg an stuck with me and supported my dreams. And I have met many new friends in graduate school that I hope to stay in touch with for years to come. I learned much from my colleagues, and they made this grueling program easy to bear. Thank you to all my fami ly, especially my mom and my dad, for their love and encouragement. Even though I did not get to see them much during my time at UF, I knew they were back home cheering me on and supporting me from afar. Finally, I thank my Lord Jesus Christ for His guida nce and protection the last five years. When I was first diagnosed with ulcerative colitis almost seven years ago, I did not understand why I had this disease or what my future would hold. But I trusted the Lord and put my faith in Him, knowing that only t he Lord could bring goodness from such a terrible situation. I never anticipated any of the ways He would use my illness to help other people, and I do not know where His path will take me next, but I am confident He will continue to use my life for His gl ory.
6 TABLE OF CONTENTS page ACKNOWLEDGMENTS ................................ ................................ ................................ .. 4 LIST OF FIGURES ................................ ................................ ................................ ........ 10 LIST OF ABBREVIATIONS ................................ ................................ ........................... 11 ABSTRACT ................................ ................................ ................................ ................... 12 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ .... 14 Primer on Inflammatory Bowel Disease ................................ ................................ .. 15 Disease Incide nce ................................ ................................ ............................ 16 Causes of the Disease ................................ ................................ ..................... 16 Risk Factors ................................ ................................ ................................ ..... 17 Treatment ................................ ................................ ................................ ......... 17 Psychological and Social Effects ................................ ................................ ...... 19 Social Support Opportunities ................................ ................................ ............ 21 Elect ronic Resources for People with Inflammatory Bowel Disease ....................... 23 Why Study Online IBD Communities? ................................ ................................ .... 26 Research Outcomes ................................ ................................ ............................... 28 Preview ................................ ................................ ................................ ................... 30 2 LITERATURE REVIEW ................................ ................................ .......................... 33 Online Communities ................................ ................................ ................................ 33 Construction of Online Communities ................................ ................................ 34 Online Health Communities ................................ ................................ .............. 39 Physical and Online S pheres ................................ ................................ ........... 44 Are Online Communities Real? ................................ ................................ ........ 47 Health Blogs ................................ ................................ ................................ ........... 49 YouTube a nd Health ................................ ................................ ............................... 53 YouTube and Health Information ................................ ................................ ...... 54 Challenging Conventional Medical Authorities on YouTube ............................. 57 Importance of YouTube to Medical Professionals ................................ ............ 59 Gaps in the YouTube Research ................................ ................................ ....... 61 The Inter play of People, Communities, and Technologies ................................ ...... 65 The Social Construction of Medicine ................................ ................................ ....... 70 Theoretical Assumptions ................................ ................................ ......................... 74 Research Questions ................................ ................................ ............................... 81 3 METHODS ................................ ................................ ................................ .............. 85
7 Ethics of Digital Ethnographies ................................ ................................ ............... 86 Lurking in the Shadows: The Ambiguity of Consent ................................ ......... 86 Gaining Access to a Community ................................ ................................ ...... 91 Communities under Examination ................................ ................................ ............ 91 A Variety of Data Collection Methods ................................ ................................ ..... 96 Material Created by Community Leaders ................................ ......................... 96 Material Created by Audience Members ................................ .......................... 98 Data Collected through Direct Engagement with Community Leaders ............. 99 Data Collected through Direct Engagement with Audience Members .............. 99 Personal Experiences within the Community ................................ ................. 101 Data Analysis ................................ ................................ ................................ ........ 102 Institutional Review Board Protocol ................................ ................................ ...... 103 4 RESULTS: THE CONSTRU CTION AND MAINTENANC E OF ONLINE COM MUNITIES ................................ ................................ ................................ .... 104 How Online Communities are Created ................................ ................................ .. 104 Different Forms of an Online Community ................................ ....................... 105 Non Profit Communities ................................ ................................ ................. 110 Division of Roles ................................ ................................ ............................. 111 Reason for Existence ................................ ................................ ..................... 112 Use of Technology ................................ ................................ ......................... 116 Trajectories of the Online Communities ................................ .......................... 124 Challenges in Maintaining Onli ne Communities ................................ .................... 125 Community Leader Challenges ................................ ................................ ...... 126 Community Member Challenges ................................ ................................ .... 129 Summary ................................ ................................ ................................ .............. 137 5 RESULTS: RELATIONS B ETWEEN ONLINE COMMUN ITIES AND EXISTING SUPPORT STRUCTURES ................................ ................................ ................... 138 A New Kind of Supp ort, and a Reaction against Existing Support Structures ....... 138 Support for and Criticism of the CCFA ................................ ........................... 139 Benefits of Online Support ................................ ................................ .............. 145 Face to Face Support vs. Online Support ................................ ...................... 150 Health Information: Changing Views on the Role of Medical Professionals .......... 154 Criticism of Medical Professionals ................................ ................................ .. 154 Support of Medical Professionals ................................ ................................ ... 157 Sharing Health Information and Medical Advice ................................ ............. 159 Response from Medical Professionals to Online Communities ...................... 170 Summary ................................ ................................ ................................ .............. 172 6 RESULTS: THE FLEXIBI LITY OF COMMUNITY AN D DISEASE ........................ 175 Intersections and Overlaps between the Physical Sphere and Online Sphere ..... 176 Drivers of Online Support Seeking ................................ ................................ . 176 Health Effects of Online Health Information ................................ .................... 179
8 Raising Awareness Online and Offline ................................ ........................... 182 Meeting in Person ................................ ................................ .......................... 186 Social Construction of Inflammatory Bowel Disease using New Media Technologies ................................ ................................ ................................ ..... 189 The Refiguring of the Body is Beautiful ................................ .......................... 190 Inflammatory Bowel Disease is Serious and Deadly ................................ ...... 198 Inflammatory Bowel Disease is Humorous ................................ ..................... 204 The Disease Makes One Stronger ................................ ................................ . 209 The Disease is Invisible, but Needs to be Made Visible ................................ . 213 Summary ................................ ................................ ................................ .............. 216 7 DISCUSSION: TOWARD A HOLISTIC UNDERSTANDI NG O F PEOPLE, COMMUNITIES, AND TEC HNOLOGIES ................................ ............................. 218 Application of Activity Theory to the Online IBD Community ................................ . 2 18 Subject Means Object: T he Effect of Technology on Action .......................... 219 Subject Community Object: How Communities Shape the Behavior of Individuals ................................ ................................ ................................ ... 224 Community Me ans Object: How Communities Use Technology to Accomplish Their Goals ................................ ................................ .............. 228 Community Division of Labor Object: The Powerful Influence of the Community Leader ................................ ................................ ...................... 232 Development of Communication Theory ................................ ............................... 237 8 CONCLUSIONS: FUTURE AVENUES OF RESEARCH ................................ ...... 239 Summary of Maj or Findings ................................ ................................ .................. 239 Limitations ................................ ................................ ................................ ............. 243 Participant Selection ................................ ................................ ....................... 244 The Ethno graphic Method ................................ ................................ .............. 245 Future Research Opportunities ................................ ................................ ............. 248 Online Health Communities for Other Chronic Health Conditions .................. 248 Creation of Online Communities Outside of the United States ....................... 249 Use of New Media Technology to Recreate and Redefine a Disease ............ 250 Advancing Digital Ethnography ................................ ................................ ............. 251 A New Method of Digital Data Collection ................................ ........................ 255 Practical Applications ................................ ................................ ............................ 258 Final Words ................................ ................................ ................................ ........... 260 APPENDIX A MY PERSONAL STORY ................................ ................................ ....................... 261 Finding and Providing Support Online ................................ ................................ .. 265 My Current Situation ................................ ................................ ............................. 267 B INTERVIEW GUIDE FOR COMMUNITY LEADERS ................................ ............ 269
9 C SURVEY GUIDE FOR AUDIENCE MEMBERS OF IBD COMMUNITIES ............ 274 D RECRUITMENT EMAILS AND INFORMED CONSENT ................................ ....... 277 Recruitment Email Sent to Community Leaders ................................ ................... 277 Informed Consent for the Open Ended Interview with Community Leaders ......... 279 Recruitment Message Posted on Facebook Pages Soliciting Responses from Audience Members ................................ ................................ ............................ 283 Recruitment Message Posted on IBD Blogs Soliciting Responses from Audience Member s ................................ ................................ ............................ 284 Informed Consent for the Open Ended Survey with Audience Members .............. 285 E DESCRIPTION OF ONLINE IBD COMMUNITIES ................................ ................ 288 F SCREENSHOTS OF IBD COMMUNITIES ................................ ........................... 293 LIST OF REFERENCES ................................ ................................ ............................. 306 BIOGRAPHICAL SKETC H ................................ ................................ .......................... 319
10 LIST OF FIGURES Figure page 2 1 Activity triangle, adapted from Engestrm (1999) ................................ ............... 66 2 2 One possible application of the activity triangle to the online IBD community .... 68 7 1 Examining how individuals use new media technology to achieve communicative goals. ................................ ................................ ....................... 219 7 2 Examining the influence of a community or communities on the way individuals communicate about health. ................................ ............................. 224 7 3 Examining how communities use similar means to pursue many different objects. ................................ ................................ ................................ ............. 228 7 4 Examining how the differing roles within a community. ................................ .... 233 F 1 iHaveUC website ................................ ................................ .............................. 293 F 2 The Great Bowel Movement t shirts being worn in public ................................ . 294 F 3 Fernpixel giving her audience an update and asking for their questions for a future video ................................ ................................ ................................ ....... 295 F 4 Heidi showing how she manages her ostomy while rock climbing .................... 296 F 5 Girls With Gu ts website ................................ ................................ .................... 297 F 6 Blood, Poop & Tears website ................................ ................................ ........... 298 F 7 Awestomy Kickstarter campaign to raise money for new product development ................................ ................................ ................................ ..... 299 F 8 Twitter account of Jeffrey from A Guy With Crohn s ................................ ......... 300 F 9 Kelly s Tumblr account ................................ ................................ ..................... 301 F 10 Lauren s Instagram account ................................ ................................ ............. 302 F 11 Maggie demonstrating how to change an ostomy appliance ............................ 303 F 12 Michael Weiss website ................................ ................................ ..................... 304 F 13 Facebook page for The Stolen Colon ................................ ............................... 305
11 LIST OF ABBREVIATIONS IBD Inflammatory bowel disease, an autoimmune condition that affec ts the digestive tract. IBD has two forms; Crohn s disease, which can affect the gastrointestinal tract anywhere from the mouth to the anus; and ulcerative colitis, which only affects the colon.
12 Abstract of Dissertation Presented to the Graduat e School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy WE KNOW THE WAY OUT: CREATING ONLINE INFLAMMATORY BOWEL DISEASE COMMUNITIES By Dennis Owen Frohlich August 2014 Chai r: Kim Walsh Childers Major: Mass Communication For people with chronic illnesses, managing health conditions can be difficult. With the rising popularity of social media, patient communities have gotten far more sophisticated than earlier, text based on line support groups like message boards or forums. This ethnography examines patient created and patient centered online health communities for people with inflammatory bowel disease (IBD). This study has several major findings. First, community leaders us e a small subset of social media technology to create multi platform support communities. Second, communities face several challenges in staying active. Community leaders do not always have time to invest in the community, especially when they struggle wit h their own health problems, and sometimes conflicts can arise between members, or members can become disconnected from each other because their health situation can vary widely from others situations. Third, these online communities exist in part as a re action against existing non profit and medical professional support structures. While communities try to fill in the emotional support and informational support gaps left by established non profits and medical professionals, community leaders do not want t heir communities to
13 take the place of disease experts. Finally, community members use new media technology in myriad ways to challenge stigma and redefine what it means to live with IBD. This study provides a foundation for further research on the uses of online technology by patients to manage their health, and serves as a guide for more comprehensive research about online communities for other chronic health conditions.
14 CHAPTER 1 INTRODUCTION Inflammatory bowel disease (IBD) is an umbrella term for two distinct but related diseases, ulcerative colitis and Crohn s disease. Ulcerative colitis is characterized by continuous patches of ulcers in the colon that cause diarrhea, bleeding, urgency, pain, and bloating. Crohn s disease can affect the digestive tr act anywhere from the mouth to the anus, though it is usually found in the terminal ileum (the transition between the small intestine and colon) or the colon (Crohn s and Colitis Foundation of America [CCFA] , 2012b). Both are autoimmune diseases with no kn own cause. The diseases fluctuate between periods of disease activity (flare up) and remission (minimal to no symptoms). The goal of standard medicinal treatment (and occasionally surgery) is to get the disease into remission: at this time, there is no cur e for either disease (Mayo Clinic, 2011a, 2011b). When I was 21, I was diagnosed with ulcerative colitis (see Appendix A for the full story). I was living in North Dakota at the time, and unfortunately I could not find a single support group. I had never heard of the disease before I was diagnosed. In fact, I did not even know that colon and large intestine refer to the same organ (I find that few people know this, so I now mak e it a point to emphasize this). When I was facing surgery to remove my col on, I stumbled upon the online community for people with IBD, and from there, learned much about managing my disease, accepting my situation, and challenging the stigma both internal and external associated with this sometimes messy, smelly, and embarrassi ng disease. Soon after finding the stories of others online, I began sharing my own. I created a web community, The United Colon Vlog, which was the start of my outreach to people with IBD.
15 What I have found through my work is that online social support is crucial and necessary for many people with chronic illness, including IBD. This dissertation is the culmination of more than six years of living with IBD and five years of actively working in the IBD community. While the online community was relatively small when I first began my work, it has since grown, and there are now many more people telling their stories, some in f ar more interesting ways than I ha ve ever done. Using ethnographic methods with myself as a participant observer, I examine d how this c ommunity functions and dysfunctions, how it is created and sustained in the online space, and how the community is breaking barriers for this embarrassing and difficult disease. In the remainder of this chapter I discuss in more detail how IBD affects peop le, why this research is important, what the outcomes of this research will be, and preview the subsequent chapters of this dissertation. Primer on Inflammatory Bowel Disease Before talking about theoretical issues related to online health communities, it is necessary to understand how IBD affects people. Too much health communication research, in my opinion, treats health conditions as interchangeable. Communication scholars like to examine communication processes and effects and thus study health conditi ons that work well within a particular theoretical framework. In other words, health communication scholars often seem to examine conditions based on superficial criteria (e.g., I s the disease stigmatizing? Does the disease affect many people? Does the dis ease affect one gender, minority, or age group more than others?), and never really elaborate on how that specific disease affects communication behaviors around the disease.
16 I take a different approach, as I believe that health communication around a di sease is at least somewhat contingent on the disease itself : if the disea se is removed from the equation and swapped with another, the communication environment will change based on the idiosyncrasies of that health condition. While inflammatory bowel dise ase bears some similarities to other chronic illnesses like arthritis, diabetes, cancer, or genetic syndromes these chronic conditions are not interchangeable. The similarities between conditions allow us to make some comparisons in how people communicate about their health, but the differences might help explain why certain theoretical ideas fit better with some diseases and not others. How understanding IBD as a disease might affect communication theory will be discussed later in the dissertation; for n ow, the following facts about the disease are pertinent for understanding why some patients feel compelled to communicate about their disease in online communities. Disease I ncidence Crohn s disease was first described in 1932 by Dr. Burrill B. Crohn, Dr. Leon Ginzburg, and Dr. Gordon D. Oppenheimer (CCFA, 2013c). Crohn s disease affects approximately 700,000 Americans, and ulcerative colitis also affects approximately 700,000 Americans (CCFA, 2013d). Causes of the D isease While some people suspect that diet and stress are causes of inflammatory bowel disease, researchers now believe that diet and stress do not cause the disease, but can aggravate symptoms (Mayo Clinic, 2011a, 2011b). Researchers believe that both Crohn s disease and ulcerative colitis ha ve two possible causes or influences, though nothing is certain. A faulty immune system is one potential cause: doctors
17 theorize that the immune system in the body is triggered by a foreign agent, such as a bacteria or virus. The immune system normally a ttacks the foreign agent, but in the case of people with IBD, the immune system attacks the digestive tract and cannot turn itself off when the foreign agent is no longer a threat. The second potential cause is heredity, as numerous genes have been assoc iated with IBD. People with IBD, though, typically do not have other family members with the disease (Mayo Clinic, 2011a, 2011b), so it is not yet known what role genetics ultimately plays. There is also some evidence that IBD affects people more in develo ped nations than developing nations (Molodecky et al., 2012). Some researchers have explored the hygiene hypothesis, the idea that people in industrialized (more sanitary) environments are not exposed to as many intestinal pathogens during childhood; there fore, when they are exposed to new pathogens later in life, the body s immunological response is inappropriate (Molodecky & Kaplan, 2010). Evidence confirming this hypothesis, however, is weak. Risk F actors Men and women are affected about equally with th e disease (Mayo Clinic, 2011a, 2011b). Age is a factor, as people usually develop the disease before age 30, though some people in their 50s and 60s can be diagnosed with ulcerative colitis (Mayo Clinic, 2011b). The disease can affect any ethnic group, tho ugh Ashkenazi Jews are particularly susceptible. Smoking can be a risk factor for Crohn s disease (Mayo Clinic, 2011a), and some studies have linked use of the acne drug isotretinoin (brand name Accutane) to ulcerative colitis (Mayo Clinic, 2011b). Treatm ent Both Crohn s disease and ulcerative colitis are treated in much the same way, often using identical medications. Pharmaceuticals are used to suppress the immune
18 system, which limits disease activity in the digestive tract but can also weaken the body s overall immune system, making patients more susceptible to other diseases and infections. Some patients find that certain foods affect their symptoms and that they can lessen disease activity by avoiding (or consuming) certain foods. Because there is no cure for the disease, the goal of medication and lifestyle changes is to get the disease into remission, which is a period of minimal disease activity. Surgery, though, is sometimes necessary to get the disease under control. About 70% of people with Croh n s disease eventually have surgery, often to remove a damaged section of the bowel (CCFA, 2013b). Surgery can help patients maintain or achieve a better quality of life, though the disease often reappears later in life. Thirty percent of patients with Cro hn s disease have disease recurrence within three years, and 60% within 10 years. About 25 33% of patients with ulcerative colitis eventually have surgery (CCFA, 2013a). They might have a portion to the entirety of their colon removed (colectomy). After su rgery, a person might live with an ostomy or a J pouch, which is an internal pouch made from the terminal ileum which replaces the rectum, allowing the person to defecate in a nearly normal way. One of the most common surgeries for ulcerative colitis is t he colectomy, or removal of the colon, and some consider this s urgery a cure for the disease because the disease often does not recur after surgery. Others, including myself, do not consider this surgery a cure, as it drastically changes how one lives an d does not restore the person to the way he or she was before the diagnosis, even though it can provide considerable relief. Surgery often leaves people with an ostomy, either temporarily or permanently, and while it can take a while to adjust to it , peopl e often hav e few regrets
19 about the surgery as it can improve t heir lives dramatically (Savard & Woodgate, 2009). People who undergo colectomies often experience less urgency, frequency, bleeding, and pain. For people who were diagnosed with ulcerative coli tis, a colectomy often means the cessation of medication: because the disease is no longer present, and the risk of it spreading to other parts of the digestive system is low, people no longer need to take immunosuppressant drugs. Without those drugs, thei r immune system builds up again, lowering the risk for infections. People with ulcerative colitis also have a higher risk of colon cancer (American Cancer Society, 2013) ; removing the colon lowers that risk. Living without a colon, though, is not without its drawbacks. An ostomy bag can leak, and some people with J pouches experience leaking as well. Because the colon s main job is to absorb water, not having a colon results in looser stools, a state of having something not quite as bad or watery as diarr hea, but close. Because I no longer have a colon and instead have a J pouch, I go to the bathroom much more frequently than the average person; however, the lack of urgency, pain, and accidents makes the trade off worth it to me. Psychological and Social E ffects Inflammatory bowel disease has wide ranging effects on a person s life beyond the physical. A recent study, mostly of females with IBD (81%), found that most people with IBD have a lower quality of life compared to the general population and that p eople with lower health related quality of life (HRQOL) tend to have higher perceived stress, more hospitalizations, and lower perceived social support (Moradkhani, Beckman & Tabibian, 2013). In a qualitative study of patients with Crohn s disease, researc hers found that the disease limits life in many ways (Pihl Lesnovska, Hjortswang, Ek & Frisman, 2010). Common limitations include: pain, constantly searching for bathrooms,
20 lack of energy, and worrying about the future. Body image can also be a problem: so me people experience rapid weight gain due to steroid use, particularly in the face, and some people experience rapid weight loss due to diarrhea, which is also troubling. Many people feel powerless, especially when experiencing side effects of treatment. The main side effect of immunosuppressant medications is weakening of the immune system, which can lead to more infections. The drug prednisone is particularly notorious for side effects. W hile the drug is very effective for inducing remission, there is a cost: moon face, which is the swelling of the face due to the body s retention of water; increased hunger and weight gain; sore joints; and for those taking the medicine for years , a decrease in bone density, which can lead to osteoporosis (MedlinePlus, 2010). Dudley Brown and Baker (2012) found that ulcerative colitis negatively impacts almost all patients lives and often makes daily activity burdensome. Seventy five percent reported sexual difficulties , 64% reported relationship difficulties with a sp ouse or partner , 60% reported that the disease had wrecked important moments of their lives, and 59% reported relationship diffic ulties with friends and family. Most patients believe the disease is embarrassing and makes them feel more stressed and helples s . Most patients also learn to live with their disease and see frequent flare ups and bathroom visits as normal. Sixty two percent even felt it would be normal to have more flares than they currently do on average, suggesting that many patients have a high tolerance for disease activity in their lives. I recently conducted a study in which I interviewed 14 people with IBD about their experiences with support and stigma (Frohlich , 2014 ). While most of them appeared to have adjusted well to their disease and overall reported supportive behavior from loved
21 ones, friends, supervisors, and teachers, all still had at least one story of being strongly stigmatized because of their disease. Sometimes this stigma even came from their doctors or nurses. A few people r eported losing their jobs because of IBD, which put pressure on their families to take care of them. One woman had just started working at a bank when she had a hospitalizing flare up ( which actually put her in a coma ). Because she had been at the bank les s than three months, bank officials were within their rights to fire her without cause. Other research corroborates my findings: in another study, mostly of women with IBD (78%), Taft, Keefer, Artz, Bratten, and Jones (2011) found that perceptions of stigm a for people with IBD tend to decrease as age increases and length of diagnosis increases. I also have volunteered for four summers as a counselor at Camp Oasis, a CCFA sponsored summer camp for children and teens with IBD; through talking with campers, I have learned that many of them experience significant stigmatization at school because of their disease (Frohlich, 2012). These campers often miss school for days to weeks at a time because of hospitalizations. When they return, they often find that clas smates have spread rumors about them while they were away. One girl told the camp that her classmates had said she had died . Other researchers have found that IBD can significantly affect young people. Youth with IBD have higher rates of depressive disorde rs compared to youth with other chronic health conditions, and youth with IBD also have lower quality of life and lower reported social functioning compared to healthy youth (Greenley et al., 2010). Social S upport O pportunities Non profits like the CCFA a nd the United Ostomy Associations of America (UOAA) do have a wide network of face to face support groups available for people with
22 IBD, but availability of these groups is spotty. According to the CCFA (2012a), 22 states have one support group or no group s . The states with the best coverage are California (29 groups), New York (18), Florida (15), Ohio (11), and Pennsylvania (11). Even within individual states, however, large geographic areas have no support groups. In Texas, for instance, seven of the stat e s 10 support groups are located around the Dallas Fort Worth metro area. Michigan has six support groups, but only one in the Upper Peninsula. States that have support groups, not surprisingly, tend to locate the group s in larger cities: Oregon s only su pport group is in Portland. People in rural communities often have no support group within hundreds of miles. While there may be support groups not affiliated with the CCFA, perhaps operated by individual hospitals or churches, finding these support groups would likely occur through happenstance or word of mouth, as no national listing of them exists. The UOAA also offers support groups, and while people might have ostomies for reasons other than IBD (e.g., colon cancer), some people with IBD do attend UOA A support groups. The UOAA has much better support group coverage than the CCFA, with only 7 states that have one or less support group (Alaska, Hawaii, Mississippi, Montana, North Dakota, Rhode Island, and Wyoming). The same concerns remain, however: cove rage is patchy in some states, and rural areas again are underserved. Many people with IBD do not have ostomies, so they would not attend these groups unless they were considering surgery and wanted more information on living with an ostomy . Research on t he effects of social support for people with IBD has been mixed. Elevated levels of perceived social support can lead to decreased adverse outcomes of
23 Crohn s disease, such as flare ups (Cmara et al., 2011). However, p eople with IBD can cope with the dise ase in ways other than attending a support group . McCombie, Mulder, and Gearry (2013) identified several ways that people cope with the disease. Problem focused coping seeks to eliminate sources of stress, and research has shown that it tends to have weak positive effects on psychological outcomes and is most useful for people with less disease activity. Emotion focused coping, on the other hand, seeks to reduce emotional distress caused by a situation. McCombie, Mulder, and Gearry found in their meta analy sis that this form of coping is generally associated with worse psychological outcomes, though the results are highly variable between studies, so more research is needed to know what coping strategies work best. For instance, Fletcher, Schneider, Van Rave nswaay, and Leon (2008) reported that young women with IBD find that having a good attitude and seeing positive outcomes of the disease (e.g., it makes one a stronger person) also help with coping. Electronic Resources for People with Inflammatory Bowel Di sease While there has been no research into the ways that the online IBD community (as I conceive it) functions, there has been some research about electronic resources for people with IBD, with most research focusing on the quality of information found o nline. Bernstein et al. s (2011) study of patients diagnosed with IBD found that patients have considerable information needs during the first two months after diagnosis, but that these needs often go unfulfilled. Twenty four percent of patients were dissa tisfied with information provided at the time of diagnosis, and 31% were moderately satisfied. The most common information sources were their gastroenterologist and a website about IBD. Patients rated the following information sources as Very Acceptable : discussion with medical specialist (89%), brochure or booklet (73%), website
24 recommended by healthcare provider (58%), information provided by a support group such as the CCFA (55%), and video recording (49%). While their needs for biomedical information are often fulfilled, information needs about coping and living with the disease are often unaddressed. Sixty eight percent of patients thought that information about sources of support in coping with IBD was very important, yet 78% of patients received lit tle to no information on the topic from their doctors. Similarly, 64% of patients thought that information about managing time away from work or school was very important, but 89% received little t o no information on the subject. I nformation about how to i nform family members about IBD was very important to 47% , but 82% received little to no information about how to do this. Because so many people with IBD do turn to the web for health information, credibility of health information is important . Researcher s checking the quality of IBD websites obtained through common search engines found, not surprisingly, that some websites provided good or excellent health information, and many provided poor or fair quality health information (Van Der Marel et al., 2009). Charitable sites like the CCFA often ranked very high, while alternative medicine and pharmaceutical sites tended to rank low in terms of health information quality . Surprisingly, Van Der Marel et al. often ranked institutional sites IBD health informati on as fair . Another study particularly relevant to this dissertation is Mukewar, Mani, Wu, Lopez, and Shen s (2013) study of IBD videos on YouTube. They found that patient videos had significantly more views and co mments than professional videos and that 60% of videos dealt with personal patient experiences. Personal videos expressing positive attitudes spoke of surgical or medicinal success. Some videos expressed negative attitudes, though, because of the
25 failure of conventional treatment, side effects o f medicine, and financial struggles caused by the disease. They found that videos were predominantly viewed by people aged 45 54, though I have suspicion about how accurate YouTube s audience metrics are, considering that they do not capture viewers who ar e not signed in or who have not created a profile. The authors concluded that most IBD videos on YouTube had poor educational quality. I recently conducted a study about IBD cure information presented online (Frohlich & Birnbrauer, 2014 ) and found that t he idea that IBD can be cured is easily dismissed by medical professional websites. However, any patient searching for information about cures has easy access to information about myriad cures using common search engines. While medical professionals migh t think this information lacks credibility and scientific accuracy, many patients think that this information is helpful in managing their disease. Evidence in support of these patient cures, though, is largely anecdotal and based on personal, often anonym ous, testimony. Even if patients find quality health information online, is more health information always helpful ? A study of IBD patients in Australia found that patients with higher levels of IBD knowledge also have higher levels of anxiety (Selinger e t al., 2013). As with all correlations, causation cannot be determined one way or the other: people with IBD might be anxious because they know about all the risks and complications of I BD, or because they are anxious they seek out more knowledge. Resear ch about online support groups for people with IBD has been limited to one study. Malik and Coulson (2011) studied an online support group for young people in the United Kingdom and found that most discussion s concerned: personal
26 experience, sharing of inf ormation, requesting of information, and offering support or empathy. Only 0.5% of discussion posts had negative statements. Many people did qualify information disclosures by saying that they were relating their own personal experience, suggesting that no t everybody who shares information makes blanket statements that this is the way the disease always works, as medical professionals often fear patients do when sharing health information online: It was also noted that when a member offered advice, other me mbers would often enter into the discussion with their own opinions and experiences, thus creating an opportunity for recipients to appraise the credibility of the initial advice. Moreover, many participants clearly communicated that the information they w ere providing was based solely on their own personal experiences with the illness. (Malik & Coulson, 2011, p. 445) Why Study Online IBD Communities? As a CCFA support group facilitator in Gainesville, Florida, I know that support groups do have value, an d for many with IBD, support groups provide the first opportunity to meet others who have the same disease. Unfortunately, most support groups only meet for an hour to 90 minutes once a month, and some CCFA support groups only meet quarterly. Attendance is fluid, as many people are sick or experiencing a flare up on support group night; thus, they miss the meeting. Some people will miss support group meetings for several months because their chronic disease prevents them from attending consistently. The on line community has the potential to rectify many of the structural limitations of face to face support groups. Based on my own experience in the IBD community with UCVlog, and through a line of research on online support communities (see Froh lich & Zmyslin ski Seelig, 2012; Frohlich & Zmyslinski Seelig, under review), I have seen how thousands of people with IBD can find support online . The Internet does
27 not have the same limitations as face to face communities. People can access the community any time of th e day or night, any day of the month. Online communities are also far easier to access when people are sick or hospitalized. Many viewers have told me they watched my videos for hours while hospitalized because they had nothing else to do. Online communiti es also expose participants to far more people with IBD than they could ever meet in person. Whether medical professionals like it or not, and whether websites offer trustworthy information or not, the reality is that many people with health conditions go online to find information about illnesses, find treatment advice, and find and offer support. According to Fox and Purcell (2010), 62% of adults living with one or more chronic illnesses go online compared to 81% of adults with no chronic disease . People with chronic illness get their information from a variety of sources: 93% from a health professional; 60% from a family member or friend; 56% from books or print resources, and 44% from the Internet. When controlling for age, education, and type of Intern et access, people with chronic illness es consume more user generated health content than the general population: 37% have read about somebody else s experience through a blog, website, or news group; and 25% have consulted rankings or reviews of hospitals and medical facilities (report did not specify what percentage of people with no chronic illnesses participated in these activities) . Additionally, 20% of people with chronic illness create some form of online health content: posting comments or questions on a discussion group, posting a review of a hospital, and/or sharing photos or videos (Fox & Purcell, 2010).
28 Many patients feel the need to share their story and to help others. Understanding how these communities are created will help scholars and medic al professionals alike determine what is truly beneficial about online communities and what is worrisome. Research needs to move beyond simply asking what information people search for, how accurate the information is, and if social support provides any t angible benefits, as will be discussed later in this paper. Research Outcomes Online communities constitute more than just formalized support groups. Online communities include the creators and users of Facebook groups, blogs, websites, YouTube videos, a nd many more new media and Web 2.0 technologies. The purpose of my research was to uncover how online IBD communities function as sites for information and support for people with IBD. This study examine d how these communities are established, how they are maintained, how people with IBD benefit from spending time in the communities (and conversely, how these communities might be detrimental to peoples psychological, social, or physical health), and how these communities exist in relation to the medical es tablishment and formalized non profits like the CCFA and UOAA. As Chapter 2 will show, much research about online health content examines singular online health spaces: that is, these studies only examine health message boards or forums , only examine heal th blogs, or only e xamine health videos on YouTube . Instead of examining one Internet platform, I want to examine how IBD communities are constructed across platforms. The first outcome of this research is an understanding of h ow communities are built usin g multiple Internet technologies (e.g., a YouTube channel, blog, and traditional website). I could identify no previous research of
29 this nature, likely in part because cross platform community building is a relatively recent online phenomenon. Additionally , as this dissertation shows, studying Internet communities established through multiple social media platforms is fraught with methodological challenges. Another outcome of this research is a better understanding of how the patient community interacts wi th the established medical community. Research often conceptualizes patient voices as separate from medical voices, as will also be explained in Chapter 2. Patients and physicians , however, do not need to be construed as op erating in two separate spheres . The web is a potentially democratizing space through which multiple voices can discuss an issue, so my research show s , at least from the patient community s perspective , how their work overlaps with the work of medical professionals. This dissertation als o intended to enhance understanding of how people with IBD use new media to connect with each other, educate one another, and fill in the gaps that medical professionals are leaving. (For example, m any of my viewers tell me that their doctors do not unders tand what it is like to live with IBD; hence, they find it valuable to hear from another patient.) Health communication researchers often skip over the social part of social media and go straight to understanding health outcomes (e.g., Does frequency of blogging correlate with higher perceived levels of social support?). Sometimes researchers can draw conclusions about the effects of participating in a health community, but then cannot explain how that community actually worked to produce those effects. W ith this ethnography, I took a step back to analyze the specific
30 ways that communities are formed. This involved an analysis of both the media structures and the content of media. Preview In C hapter 2 , I discuss the current research on support communities , health blogs, and online videos . While much research has been conducted about health communities and information online, it is often piecemeal, so gaps will be identified that this dissertation was intended to fill. Theoretical concepts useful to this et hnography will also be discussed, though not in great detail, as I want ed to minimize any theoretical bias es I brought to the project that could prematurely influence my interpretation of the results. C hapter 3 describes how this ethnography was conducted . Data came from five primary sources: my personal experiences within the community; data from material created by community leaders ; data from material created by viewers and readers; data collected through direct engagement with community leaders ; and da ta collected through direct engagement with viewers and readers. Direct engagement with community leaders and viewers and readers took the form of interviews and open ended surveys. Chapter 4, the first of three results chapters, focuses on addressing th e first two research questions, which concern how Internet communities are created and what challenges community leaders face in maintaining their communities. This chapter describes how specific social media technologies are used in the creation of these communities, both intentionally and unintentionally by participants. I also explain how specific behaviors by individuals can damage or weaken these communities, as well as
31 how certain social media technologies privilege some voices in the community over o thers. In Chapter 5, I show how different segments of the community interact with each other, addressing Research Question 3. Patient communities in many ways are similar to formal, professional non profits in the services they provide, and yet patient co mmunities have a complex relationship with large non profits, particularly the Crohn s and Colitis Foundation of America. Some patient communities have even taken it upon themselves to create their own non profits to address perceived gaps in support left unfilled by the CCFA. I also discuss how patient communities view themselves in relation to medical professionals, especially when it comes to disseminating health information. Chapter 6, the final results chapter, explores how the online sphere and physi cal sphere intersect and overlap with each other, answering Research Question 4. Research into online communities often fails to examine what community participants do outside of the online community. What happens when participants go offline? What happens when participants share online things that happened to them in the physical sphere? This chapter lays the foundation for a more comprehensive theory about the intersections between these spheres. Finally, I provide evidence in this chapter answering Resea rch Question 5, which was focused on the social construction of disease. In Chapter 7, I discuss how these results contribute to the development of communication theory regarding online health communities. Finally, I conclude in Chapter 8 by explicating avenues of research that this study opens up. I describe some
32 of the challenges I faced in conducting this research, providing recommendations about how scholars can improve digital ethnographic methods so that this line of research continues to be profita ble. I close by explaining how these results could be applied by medical professionals, people with chronic illness, and caregivers of people with chronic illness.
33 CHAPTER 2 LITERATURE REVIEW The Internet has received considerable scholarly attention ove r the past decade in regard to its potential to offer health information and to provide support for people with chronic illnesses. While researchers recognize the immense potential of the medium to accomplish these two goals, current studies are often crit ical of health websites for the quality of health information presented. I will start by examining how specific kinds of websites s upport groups and health communities , blogs, and YouTube channels have been studied in the past. I focus on these three type s of websites because of the multidimensional nature of this ethnography. In this ethnography I study how patient communities are constructed across social media platforms; however, most research only examines single platforms. Then I will explain how acti vity theory provides a useful theoretical lens for understanding the interplay between people, communities, and technology. I will also discuss the social construction of medicine, as IBD is a socially constructed disease as much as it is a biomedically co nstructed disease. I will articulate the theoretical assumptions that undergird this study, and finish by presenting my research questions. Online Communities Even though Web 2.0 platforms such as video sharing sites and blogs have many social components, researchers have tended to ignore these features in favor of other research interests. An examination of previous research explicitly studying online communities, then, is in order. Before looking in depth at online health communities, first I will presen t some general research on how online communities are created.
34 Construction of Online C ommunities The creation of online communities is often viewed from a social constructionist perspective. Gunawardena et al. (2009) argued that online communities are pr imarily created through discourse between members of a domain, such as a social network. Meaning is negotiated as members dialogue in a shared space. Individuals contribute what they know to the group, and the group as a whole benefits: Social networking tools mediate between the knowledge of the individual and their contribution to knowledge building within the community (p. 9). Experts in the community may construct scaffolds that facilitate growth of the community, such as tutorials or help options, that guide the user in correct navigation and procedures (p. 9) within the community. The shared creation of knowledge is often examined in educational settings. Yang, Yeh, and Wong (2010) examined a university online learning community in which studen ts submitted papers, read and offered revisions for others papers, edited the papers, and reposted them, continuing in this collaborative way to improve the quality of papers. The researchers viewed the social interaction between members as the constructi on of meaning surrounding these texts. The degree of participation naturally varied from student to student, and some edited their papers more than others. What this research revealed is that social interaction in a relatively small online community (46 pe ople in this study, small compared to the hundreds or thousands of members in many Facebook communit ies , for instance), when directed toward a tangible goal, can be vibrant, and participants can take their roles as members of a community seriously (in this case, the roles of writer and editor). Perrotta (2006) studied an online community of psychology students and professionals, and drawing on the social constructionism
35 background, analyzed how perceptions of the psychology profession were socially and cult urally constructed through written discourse between members of the forum. Researchers and educators have suggested numerous ways in which the development of online communities can be guided to better facilitate community functioning . Gunawardena et al. ( 2006) proposed a model for developing online learning communities, or wisdom communities, as the authors referred to them as. The goal of such a community is not individual learning, but collective learning as the community grows together. One of the core principles of the wisdom community is giving back : people who possess certain abilities and talents share that knowledge with others. For such communities to be successful, the researchers argued that several elements are needed. The first is mentoring. Ex perienced members can mentor new members, providing a framework of support and training so that the community coheres. The second element was termed knowledge innovation. Knowledge holds the community together, and the innovation process is cyclic, follo wing four phases: knowledge creation; knowledge recording, whereby knowledge is stored and archived in some way; knowledge access, whereby knowledge is made available to other members; and finally, knowledge enabling, in which members are taught how to use community knowledge properly for their own benefit. Gunawardena et al. (2006) proposed that one way to evaluate the process of wisdom creation is to measure transformational learning. The authors argued that when people reflect on something they previou sly have taken for granted, and then change their view , transformational learning has taken place. The article was practical in nature, offering suggestions on how to create such a community, such as in a university
36 classroom, but some of the best practic es the authors recommended may be already taking place in online health communities. These practices may not be occurring in ways as structured as Gunawardena et al. (2006) describe , but the more successful online health communities may be those th at have some form of mentorship and practice some of the behaviors of knowledge innovation, which invite s transformative learning among participants. Bober and Dennen (2001) examined the role of intersubjectivity, defined as shared understanding that helps us r elate one situation to another (p. 241), in online graduate courses. The researchers viewed the teacher s role as not necessarily an expert facilitating learning from a top down approach, but mixing with students to help facilitate peer interaction and le arning. Intersubjectivity can be hard to achieve, especially when there are technical problems and communication difficulties inherent in such groups. Synchronous communication, such as a chat room, has the problem of information overload, of too much happ ening for people to comprehend at once. Asynchronous communication, such as a discussion board, has some advantages in that it can allow people to follow mul tiple threads and ideas at once and give them time to more fully develop their ideas; however, stud ents often find it hard to break out of the mold of only responding to the instructor, not other community members. Community leaders, then, who provide discussion prompts in an attempt to get people talking , often succeed in getting people to talk with th e leader, not each other. It remains to be seen if members respond the same way to leaders of IBD communities, responding primarily to the leader and not each other, or if intersubjectivity can be achieved in an online health venue.
37 Skinner (2007) also ar gued that while co constructed and negotiated knowledge between members of an online group should be something to strive for, numerous barriers exist. When examining learning communities in a university setting, Skinner found that trust can be hard to esta blish for multiple reasons. Some students do not like exposing to the group how little they know on a particular topic, preferring instead to listen to others discuss an issue. Conversely, other students felt let down when people did not participate in the community. Some students found it embarrassing for others to have access to their thoughts. The structure of the community can also be a barrier to knowledge construction. Some students felt a particular loathing for the online discussion group as they felt that the only commonality they shared with other students was simply being in the module together; thus, it was hard to build a community with people with whom one shares little (or at least, perceives to have few commonalities). Late comers to a comm unity often felt overwhelmed if there was a deluge of messages to read through before they could respond. Comparing Skinner s study, then, to Yang, Yeh, and Wong s (2010) study reveals an interesting paradox, at least as far as learning communities are con cerned. If students are thrown into a situation where they are compelled to discuss amongst themselves when they would rather not, desirable community outcomes may be unattainable. On the other hand, as Yang et al. s study showed, online communities that a re goal directed can be very vibrant if people take their roles in the community serious ly . Online communities, though, are more than spaces in which to create knowledge. McCabe (2009) studied how members of pro eating disorder online communities constru ct reality. McCabe used fantasy theme analysis to uncover the
38 shared rhetorical vision of the community. She found that for people in this deviant behavior group, constructing metaphors for their struggles helped unify the community and allowed members to view their behavior in normalizing ways. For instance, the condition was commonly personified by members using three characters: Ana, Mia, and ED. Ana (from anorexia) is a woman who represents everything pro eating disorder women long for: a thin body, sel f control, and confidence. Mia (from bulimia) is a woman who is tolerated, and sometimes embraced, but who is flawed compared to Ana. Mia lacks self control, is lazy, and is not as thin as Ana. M embers who fail at living up to pro eating disorder standards , however, t ake comfort in Mia s fallibility . Finally, ED (from eating disorder) is the villainous male who attempts to change the girls behavior, making it more socially acceptable. McCabe showed that this rhetorical vision shaped the reality of girls in these communities and helped them accept behavior that most people in the larger society do not. Another way to view online communities is not how the community itself is constructed between members but how individuals within the community construct a se lf identity. Hurley, Sullivan, and McCarthy (2007) studied online communities f or victims of domestic violence and argued that the self is constructed through dialogue and by positioning oneself in relation to others. They found that people positioned them selves in three ways when constructing their identity. First, people positioned themselves in regard to other community members. This was done in two ways: members either positioned themselves as worse off than others, explicitly establishing themselves at the peak of a hierarchy of victimization and suffering (p. 864 865). Others positioned themselves as not as badly off as others, minimizing and weakening
39 their stories of abuse in relation to others. Second, members positioned themselves in relation to their abuser, trying to figure out how much blame to place on themselves. Finally, members positioned their present selves in relation to their past selves, such as examining how they have grown and changed positively in light of their experiences. In the later chapters of this dissertation , I show how people in online IBD communities not only socially construct the communities between members, websites, and platforms, but also how individuals position themselves in regard to others in the community, t heir disease, people outside the community, and themselves. Online H ealth C ommunities A growing body of research is focused on online health communities, which often consists of analyzing message boards and forums. According to Fox and Duggan (2013), with in the past year, 26% of Internet users have watched a video or read about somebody s health experience, and 16% of Internet users have searched for others online with the same health conditions. While the number of people involved in online health communi ties may not be high, among the people who are involved, interest can be very high . Researchers often look for connections between community use and concrete health outcomes. Beaudoin and Tao (2007), in a study of online cancer support groups, found weak evidence that asynchronous communication predicted positive health outcomes in terms of stress, coping, and depression. Zufferey and Schulz (2010) examined an online community called Oneself for people with chronic lower back pain. The community provided i nformation and support for members, and members could interact with both lay people and experts either synchronously (in real time, such as in a chat room) or asynchronously (through a message board). Members liked interacting
40 with health experts and were aware of the risk of poor health information found online, so the credibility of health experts was very important. Credibility was seen as: connection to accredited institutions, transparent identities (a name and a face), lack of attempts to sell product s, and control of the website (websites that required a log in and password, rather than websites that were open to anybody). Members were intrigued about the possibility of interacting with other patients, though many did not engage in this behavior for f ear of getting too emotionally involved. Members often did not want to think about their condition and actually wanted to avoid others with chronic pain. Many thought that because pain is such a subjective experience, they were not interested in others ex periences. In the case of this community, then, many tools were available to build an online community, but because the participants did not want to interact with others, this community did not fully develop. Lindsay, Smith, Bellaby and Baker (2009) thoro ughly analyzed an online community for peo ple with coronary heart disease aged 50 74. This community was developed by health professionals, and participants were given computers and broadband Internet access for one year to see how they used the community. The researchers examined this community in two phases: a moderated and an unmoderated phase. The moderators were often healthcare professionals who tried to spark discussion between participants and were available to answer questions, either through one o n one messages or in the discussion forum. After several months of moderation, the moderators stopped starting new discussion threads and providing discussion prompts, though they were still available if participants wanted to contact them. During the unmo derated phase, participants decreased communication with the moderators by
41 23%, but increased peer to peer communication 50%. One goal of the project was to see if patients could increase their self efficacy and have more confidence managing their disease. During the unmoderated phase, physician visits increased, perhaps because participants had lower self efficacy and confidence in their ability to manage their condition without the direct support of moderators. During the unmoderated phase, participants a lso reve rted to a poorer diet. Clearly an effective health community needs some sort of moderator to sustain the group. The researchers suggested that if an initial online intervention cannot be sustained long term, then there needs to be an exit strategy to transfer moderating responsibilities to participants in the group or a third party. Other scholars have conducted similar research looking for health outcomes from community participation. Tanis (2008) found that participating in online forums is posi ti vely related to coping, and the more active the participation, the more it helps with coping. In a more comprehensive outcomes study, Hu, Bell, Kravitz and Orrange (2012) surveyed 505 people involved in online support groups (for a variety of conditions) who had a scheduled primary care or specialist appointment within the next 14 days. They found that participants engaged in a variety of information seeking behaviors before the appointment, almost all of which were Internet based (e.g., reading medical a rticles, submitting questions to a community website, or visiting an authoritative health website). In addition, 67.5% of participants planned to ask their physicians questions about information they had found online, and 38% planned to discuss a new or di fferent treatment based on information found online.
42 Online support groups have many advantages as well as a few disadvantages. Coulson and Knibb (2007) studied an online support group for people with food allergies and found that the group was advantage ous in that it was easily accessible, provided social support and empathy, and helped participants learn new coping strategies. Because of the anonymity of participants, however, participants said it was hard to trust people when they provide information. This concern might be lessened today as many people on soci al networks use their real name rather than a screen name. In a study of an online support group for complex regional pain syndrome, Rodham, McCabe, and Blake (2009) found that not only did people support each other, but they often focused on the positives in their lives and vented about frustrations. Tichon and Shapiro (2003) suggested that self disclosure in online spaces can deepen intimacy in relationships. First, self disclosure is used to elic it social support from others. Second, self disclosure is used to provide social support to another. Finally, self disclosure is used between people to deepen a shared, reciprocal social companionship relationship. Researchers often examine messages poste d in health community forums. Ginossar (2008) studied online cancer communities, specifically communities for people with Lymphocytic leukemia and lung cancer, and examined emails sent via the group s listserv. Message types were classified as information support, emotional support, conflict, and advocacy , though informational and emotional support messages were far more common than the other types . Blank and Adams Blodnieks (2007) looked at breast and prostate cancer groups on WebMD. They found that the br east cancer groups were twice as active as the prostate cancer groups, posting twice as many messages during the same time period. Message content included: medical/treatment,
43 intimacy/sexuality, emotional expression, support and miscellaneous. The results showed that 77% of messages were sent by a cancer survivor, illustrating that people who do not have cancer are sometimes a part of these communities. Similar studies have been conducted examining forums for people with disabilities (Braithwaite, Waldron, & Finn, 1999) and eating disorders (Eichhorn, 2008). While studies that examine message content show us what people are talking about in these communities, they only show us a small part of how the community functions. When they examined message boards, Blank and Adams Blodnieks (2007) for instance, only looked at the first message in a thread, not any of the responses to avoid the iterative nature of threads of message, response, response to a response, etc. (p. 1251). This is a poor way of studying co mmunity, as the responses to members questions can tell us a lot about how that community operates. Malik and Coulson (2010) took a different approach to studying health communities by focusing specifically on the disadvantages of social support, ways in which the community did not provide support for its members as intended. They surveyed 295 participants of infertility support groups, almost all of whom were women. They found that more than 57.9% reported disadvantages to the groups, including: reading about negative experiences, reading about other women s pregnancies (which caused participants jealousy and pain, as infertile women felt alienated from their now pregnant friends), inaccurate information provided by the group, and addiction to the support group itself. Participants sometimes received unhelpful replies to their questions; the large volume of messages in forums made it hard to follow certain people s stories; and a small clique of people tended to dominate the conversations.
44 Finally, partici pants reported to a lesser extent technical issues, hostile behavior from some people, not receiving replies to messages, and lack of privacy. While this research is depressing in that it only focused on negative outcomes, it is important to remember that not everyone will benefit all of the time from social support, even in a viable health community. Finally, scholars sometimes recommended that health professionals get involved with social media to better understand their patients and to provide accurate health information when requested. Johnson and Ambrose (2006) recognized that healthcare professionals are typically late adopters of new technology and urged professionals to be involved in health communities and not lag behind their patients: By merely m aking themselves aware of patient communities, physicians can still contribute to an improved quality of the patient experience by pointing them to suitable communities. By understanding the sociocultural backdrop, and how patients use these communities & health care providers will see the need to cultivate them for improved quality of the patient s health care experience, with minimum investment on their part. (p. 112) Physical and O nline S pheres Researchers and the general public often view online occurr ences as separate from events that occur offline, in the real world. As most of the literature in this chapter illustrates, researchers often study online environments, blogs, and other social media without regard to what happens in the physical world: w hat physical manifestations of disease drive people to search for health information online? How does online health communication affect in person health communication between parents and children, doctors and patients, or friends and friends? Digital ethn ographers are beginning to grapple with the arbitrary dichotomization often made between the real world and the online world.
45 Hine (2008) said that researchers should not presume that these are separate spheres of reality, but recognize that they are actually interconnected. Boellstorff (2008) articulated that many researchers believe that research on virtual worlds must have the ultimate goal of addressing the actual world, which is taken to be the only real social world (p. 62). Leander and McKim (2003) argued that physical and online spaces are co constructed: it is not possible, or even advisable, to see them as separate spheres that never intersect with each other. Boellstorff said, Actual world sociality cannot explain virtual world sociality . The sociality of virtual worlds develops on its own terms; it references the actual world but is not simply derivative of it (p. 63). Carter (2004) found through her digital ethnography that online social relationships are deeply embedded in the existi ng practices and power relations of everyday life (p. 109), adding further credence to the idea that the virtual and physical are not so separate. Even the terms researchers use can show their bias. If the term real world is used when referring to the physical world, the presumption is that what happens in the physical world is more real, more tangible, and more important than what happens in the online world. If the terms online world and offline world are used, then the opposite problem manifests: the physical world is now defined in terms of the digital world. The term offline is subordinate to online : the physical world is defined as something less than the online world. Boellstorff (2008) preferred the term virtual when discussing the onli ne world, and defined virtual as almost the actual: there is a gap between representation in the physical world and the virtual world. This almost throws people out of balance socially, forcing them to consider anew social connections. If virtual is de fined as mediated, then Boellstorff argued that human lives have been
46 virtual all along (p. 5), as humanity has always been mediated by culture. Thus, there is no real life apart from the virtual life. In this study, the terms physical and online w ill be used to distinguish between these two spheres, but the distinction between these spheres is useful only as terminological shorthand. In the area of health, however, the split between the physical world and the online world is not so clean. People primarily go online to search for health information when they have an impetus from the physical world: they get sick, feel a weird pain, or know somebody who is sick and want to learn more about the condition (Fox & Duggan, 2013) . How their health conditi on affects them in the physical world drives them to seek out health information and communities online, and their interactions in the online world will be inextricably linked to the physical world. In most cases, a person will search for health informatio n for a condition that affects him or her dir ectly or indirectly. The number of people who get investe d in an online health community with no personal, interpersonal, or professional connection to the condition, who seek out this community just for the fu n of it, are likely in the minority. So while some research endeavors arguably should treat the online and physical worlds as fairly separate spheres of sociality, for this project, the intersections between these spheres are of prime concern. Certainly, IBD as a disease functions in the physical body: it affects the bowels primarily, but can also affect the rest of the body, particularly when nutrition is poor. The disease also affects a person s mental, social, and occupational health, and these spheres exist partially in the physical world and partially in the online world. While this ethnography is largely a study of the online IBD community, I later show the m any connections between people s online behavior and their bodily experiences with the
47 diseas e in the physical world. Community leaders and audience members alike bring their physical sphere online when they share their disease stories with others, and what they learn online may in turn influence how they manage their disease in the physical realm . Are O nline C ommunities R eal? After all this discussion of how online communities may or may not function, one relevant question needs to be asked: are online communities real communities? Driskell and Lyon (2002) grappled with this question and conclu ded that they cannot be. A community needs common ties, social interaction, and a place: a virtual community has weak ties and social interaction, but no place, argued the authors; thus, it cannot be a community. Carter (2004) found that the residents of Cybertown, a virtual city, however, did view that world as a place, and spoke about it as such, in terms such as going there or being there. Indeed, one does not technically visit the Internet. The Internet is simply the network of connections bet ween computers and some background software programs that facilitate these connections. On the Internet resides, among other things, the World Wide Web, and on the WWW reside billions of websites. So when a person goes online they always arrive at specif ic websites, such as Facebook, which could be definite places, albeit virtual. And while people might tend to have weak ties with other community members, this should not be seen as an inferior type of relationship, as Driskell and Lyons (2002) did. The argument goes: if people have little binding them together, unlike many family relationships, then participants can leave the relationship at any time: hence, the tie is weak.
48 P eople can leave online relationships at any time by ceasing to visit a commun ity or website and changing their email address, never to be found again by their virtual friends , but in the physical world relationships break down when spouses divorce, children move away from parents, and people die . If the online relationship is compl etely voluntary, however, could the voluntariness of the relationship make it more special than a relationship that is maintained because of obligation and societal pressure, such as between family members or coworkers? People can drop their online relatio nships at any time, but because they often do not, because they persist in maintaining these relationships, even though there is no obligation to do so, should not this kind of relationship be afforded higher status than that of weak ties ? The research about the benefits, challenges, and uses of online health communities is far from complete. Abbott (2009) called for more qualitative and ethnographic research to better understand the relationships between social networks and social support. While quantit ative work has some value, I think quantitative designs are inadequate for capturing the full range of supportive experiences and behaviors. From my experience, positive effects of social support are more idiosyncratic in nature than concrete. For a condit ion like IBD, which can affect people in varied ways, the benefits people receive from support groups will be contingent not only on their disease status, but on the type of support received, the type of support sought, personal factors such as attitudes a nd dispositions, occupational factors, length of time with the diagnosis, length of time receiving support, who the support comes from, and more. The value of qualitative research, then, is not in making generalizations to a group of people, but in identif ying nuances and peculiarities in a population so that researchers do not
49 make hasty and potentially inaccurate generalizations. By having knowledge about both the breadth of experience and depth of experience, discerning medical professionals can draw on a wealth of data to provide relevant recommendations to patients based on myriad personal factors. Health Blogs Perhaps becau se of the social nature of blogging technology (e.g., linking to other blogs, allowing users to comment on blogs), researchers rec ently have been studying how health blogs facilitate social support for people with health conditions. Some scholars have evaluated the quality of health information on blogs, deemphasizing the social structure of blogs, focusing instead on comparing the h ealth information patients offer to health information medical authorities offer. Rains and Keating (2011) surveyed 121 bloggers to see if bloggers perceived that they were socially supported by their community. They found that health blogging was associa ted with perceived social support from readers of that blog and that the more frequently one blogs, the greater the perceived support. Reader support was also positively associated with perceptions of personal growth and health self efficacy. While this st udy is an important beginning to understanding the community features of blogs, the study itself was rather simplistic, examining frequency and word count of posts, but not specific strategies bloggers use to get support from their audience . The researcher s looked at the proportion of posts with at least one comment and associated that measure with perceived reader support, but does simply having a comment on the blog imply community support of the blogger? What about the content of that comment? Sanford s (2010) study of morbidly obese bloggers offers much more insight into how blogging leads to social support. She surveyed 50 bloggers and examined their
50 blogs for four months and found many ways in which blogging was associated with social support. First, blogging allowed for empathy. Bloggers found that others understood what they were going through, and some found the online community more supportive than interactions they have with people face to face. Some bloggers also re read comments on their blogs, which helped them feel supported. Second, blogging ensured accountability. Morbidly obese bloggers were often trying to lose weight; if they posted their weight loss goals, readers could keep them accountable. Bloggers also shared with their readers their missteps, such as when they gained weight back. Third, blogging provided a space for venting and seeking advice. Sanford (2010) found it was hard to distinguish between the two behaviors, as sometimes a blogger vented about a problem in the beginning of the post, but by the end was asking the community for advice on how to deal with the problem, and vice versa. Bloggers also did not vent entirely about health issues: sometimes non health issues, such as marital problems, divorce, or job loss became the su bject of conversation. Fourth, blogging about obesity validated the weight loss experience. Getting comments from others and recognition from other websites helped the blogger feel supported and validated. In some cases, blogging also led to television app earances or book deals, which further validated the blogger s experience. Sujin and Chung (2007) surveyed cancer bloggers to get a general idea of the characteristics of this group. They found that 59.3% of bloggers actually had cancer; 31.9% of blogs wer e authored by family or friends of people who have cancer, and 6.2% of cancer blogs were authored by healthcare professionals. The researchers uncovered three general groups of bloggers: new bloggers, long timers (people who have been
51 blogging for a while) and a highly motivated group (people who were more involved in the online community and tended to have the most freq uent behavior change). Effects of blogging included : helping inform cancer decisions, learning new information, forming relationships, and feeling empowered. Another serious health condition examined was ocular inflammatory disease (Mehta, 2007), which causes pain and redness and can lead to uveitis, a potentially blinding condition that can cause loss of independence, lost wages, and burde ns on family and friends. The researcher studied 103 blogs to better understand the emotional and psychological impact of the disease on people. People often discussed the difficulty of getting in contact with their physicians and unsympathetic front offic e staff. Mehta suggested that physicians can learn a lot about patient perceptions and experiences by reading health blogs. Heilferty (2009) also suggested that health professionals should read patient blogs to learn more about a particular disease: Readi ng and incorporating illness blogs into care will enhance patient provider relationships by acknowledging that just a mere fraction of life with cancer can be expressed or observed during clinic visits or hospital stays (p. 1546). More general blogging r esearch has focused on the characteristics of health bloggers and the quality of health information they provide. Miller and Pole (2010) analyzed 951 health blogs in 2007 and 2008 and found that women wrote a majority of the blogs (56.8%). The average age of bloggers was 35.8 years, and two thirds had either a master s or a doctorate a highly educated population. Half of health bloggers also worked in health professions. Individual experiences with a particular health concern were discussed 42.6% of the tim e, and the conditions focused on most often
52 were mental health issues (19.8%). Of interest to this ethnography, only 5.4% of blogs focused on chronic illness. The authors mentioned b logging s interactive features blogrolls, links that appear in posts, and comment sections might be especially well suited to creating virtual support networks (p. 1516), but did not elaborate on how this is done. One goal of this ethnography is to fill this gap by understanding exactly how people build community using new med ia platforms like blogging. Examining Internet content for the quality of health information remains a top concern of researchers. Buis and Carpenter (2009) examined health and medical blogs (those blogs whose primary purpose was to provide medical infor mation, not illness journals in which a person described his or her history of illness) to understand what bloggers talked about and how they built credibility. They found that about half of blogs were disease specific, and half were general medical blogs. Most often bloggers simply responded to external media (that is, health coverage in other media). Most of these bloggers had medical credentials, but actual medical information was not very prevalent. While this study yielded some interesting results, by cutting out personal journals, they largely excluded patient voices from their study. Finally, Guardiola Wanden Berghe, Sanz Valero and Wanden Berghe (2010) tested the quality of eating disorder information on blogs. Only 37.6% presented appropriate eati ng disorder messages. Most often bloggers presented their individual opinions and disguised their identities. The authors also took issue that no blog used comment control settings (e.g., filters for inappropriate comments) or said anything about how reade rs should ethically post comments. The researchers argued that an
53 identifiable author and a link to a reputable medical institution constitute the principle quality criteria to bear in mind (p. 152), privileging medical voices over lay voices. Blogging, though, can be about more than providing health information: it can also be a tool used in identity construction as health bloggers often tell stories about themselves and what they have experienced. Bamberg (2011) argued that narratives, the small storie s people tell about themselves, can be used to construct an identity. This identity need not be fixed or subjected to one societal discourse. Bamberg suggested that instead of focusing on the content of stories, researchers could do well to examine how sto ries are told, the contexts in which they are told, and how the stories are adapted for local environments, as this process is just as much a part of identity construction as the story s content is. I agree that research about health blogs needs to conside r in greater detail the social nature of blogs, not just the content. YouTube and Health Started in 2005, YouTube is currently the third most visited website on the Internet, behind Google and Facebook at number 1 and 2 respectively (Alexa, 2012). My inte rest in YouTube is not due to the site itself : social media platforms come and go. R ather, my interest is in video as a mode of expression. People have been expressing themselves and telling their illness stories through blogs, and before that through mess age boards, for years. The written word is one of the easiest ways to express oneself on the web. Video, however, is more challenging (though becoming less so with the decreased cost of digital recorders and cell phone cameras). Additionally, video can be much more personal than the written word: from my own experience with UCVlog, I know that many people feel as though they personally know me because I speak
54 directly to them on the camera. They form a bond with me and readily trust me, more so than I think they would if I expressed myself solely through writing. Scholarly interest in health videos has understandably focused on YouTube because it is by far the most popular video sharing website and has the largest community of viewers of any video website. Research often focuses on the credibility of health information presented through YouTube videos, which is where this section will start. Following that, I will examine how users challenge medical knowledge and stereotypes through video . YouTube and H ealth I nformation YouTube is often used to educate people on all manner of subjects, and because patients often turn to the web when seeking medical information, understandably health professionals are concerned with the quality of information accessible onlin e. Backinger et al. (2011) searched for smoking cessation videos on YouTube to analyze the quality of medical information presented in 191 videos. In particular, they looked for evidence based practices. While many videos did contain evidence based practic es, more than half contained non evidence based information (which was least desirable to the researchers), or a mix of evidence based and non evidence based practices (which the researchers saw as better, but not as good as information that is exclusively evidence based). Richardson, Vettese, Sussman, Small and Selby (2011) conducted a similar study on smoking cessation videos seemingly in parallel to Backinger et al. s (2011) study and found that YouTube was not a major source of user generated smoking ce ssation content. They shared the same concerns that many of the videos do not depict evidence based practices. They recommended that public health professionals rectify the dearth of quality videos by first uploading existing versions of anti smoking
55 comme rcials to YouTube, and in the long term, developing more evidence based videos that take advantage of the interactive nature of the web. Essentially, they recommended that health professionals flood YouTube with good content to drone out bad videos. Lim Fat, Doja, Barrowman and Sell (2011) searched YouTube for videos related to infantile spasm, a rare childhood epileptic encephalopathy. This condition can be distressing for parents; thus, proper education on recognizing infantile spasms could lead parent s to seek treatment for their children sooner. The authors assessed videos on three criteria: technical quality, diagnostic accuracy, and efficacy as a clinical example. While most videos had good technical quality, only about 60% accurately portrayed a di agnosis of infantile spasms. The researchers found many excellent clinical examples that portrayed infantile spasms accurately; however, they also found many videos that were not good examples for parents. Thus, YouTube has the potential to provide high qu ality educational videos, but the researchers suggested that doctors need to be Internet guides who help patients find the right resources. Murugiah, Vallakati, Rajput, Sood and Challa (2011) examined CPR (cardiopulmonary resuscitation) videos and found t hat most videos presented accurate information about how to perform CPR, but many videos included incorrect information, omitted vital steps in the CPR process, or did not list the credentials of the people making the video. The authors noted that while Yo uTube has the potential to be a vital platform for health education, the medical content on YouTube is also unregulated. Pandey, Patni, Singh, Sood and Singh (2010) looked at swine flu videos a major public health interest in 2009 and classified them as us eful (61.3%), misleading (16.2%) and news updates (22.5%). The news updates often contained no information
56 about prevention and treatment. Fortunately, they found that videos by the Centers for Disease Control had the highest viewership and most accurate i nformation, which was a sign that people preferred quality information, though Murugiah, Vallakati, Rajput, Sood and Challa s (2011) study on CPR found that view count was not associated with information quality. The hit and miss quality of health informa tion found in YouTube videos has been documented in other studies as well. Sood, Sarangi, Pandey and Murugiah (2011) examined 199 videos about kidney stone disease and found that 68% of videos had useful information, whereas 18.1% had misleading informatio n. University channels had the best overall information regarding prevention, symptoms, treatment, and other information. Finally, Sajadi and Goldman (2011) searched Facebook, Twitter, and YouTube for information on incontinence and classified results as: useful, commercial product, complementary or alternative medicine, or not informative. On Facebook, only 13% of results were informative; on Twitter, 60%; and on YouTube, 47% of results were informative. The authors concluded that at this time, social netw orking sites do not have as much useful information as they would like. While these studies take important first steps in analyzing the quality of health information on YouTube, they all suffer from the same limitation: they do not capture how audiences p erceive these videos, or what effect this information has on people s health behaviors. People get health information from many sources, and likely nobody gets all her or his information solely from YouTube. Thus, a logical next step to this line of resear ch is to understand how people discern good information from bad when presented with online video.
57 Challenging C onventional M edical A uthorities on YouTube Presentation of accurate or misleading health information is one thing: what is perhaps more distres sing for researchers and health practitioners is the number of people on YouTube who not only present inaccurate information, but who challenge conventional medical authorities. Many people on YouTube approach medicine from a different perspective than the dominant Western perspective, and this is often (though not always) seen as a problem by researchers. To take a straightforward current issue, Ache and Wallace (2008) examined 146 videos for how they portrayed, either positively or negatively, the human p apillomavirus (HPV) vaccine, which has been shown to protect against cervical cancer. Most videos portrayed the vaccine positively, but 25% p ortrayed the vaccine negatively in that video content reflected distrust of the efficacy of the drug, complaints ab out perceived side effects, or opposition to government efforts to mandate the vaccine in young girls. Yoo and Kim (2012) examined obesity videos to see how obese people are portrayed, looking in particular for stereotype reinforcing and stereotype reducin g portrayals. They found that obesity was almost always presented as a personal failure; social and environmental factors were rarely mentioned. Unhealthy food choices and a sedentary lifestyle are the primary causes of obesity, according to the videos, an d exercise and healthy eating are the solutions. The authors concluded that these videos reinforced fat stigmatization and did little to help viewers understand the causes and solutions to obesity in a more holistic manner. Many researchers have examined smoking videos on YouTube and similarly found cause for concern about how smoking was portrayed. Forsyth and Malone (2010) found that smoking videos on YouTube were predominantly pro smoking. Additionally, it appears that certain YouTube guidelines were f requently violated, as young looking
58 girls were often shown smoking, which violates YouTube s no underage smoking guideline. Kim, Paek, and Lynn (2010) came to a similar conclusion in their examination of smoking fetish videos (videos that show people, usu ally young women, in sexualized smoking situations). They found that 85% of smoking fetish videos were easily accessible to youth, even though the content of the videos, by YouTube s own standards, should be locked to youth (meaning they would have to sign in to YouTube with an account verifying their age; youth can easily lie, however, about their age, with no penalties). Elkin, Thomson and Wilson (2010) examined smoking videos for their use of brand imagery. Major tobacco companies say they do not adverti se online, though the researchers found that many pro smoking videos did contain brand imagery. The researchers strongly implied that tobacco companies were indirectly advertising their products through user generated videos, though this assertion could no t be supported by the study. Vogel (2011) warned against medical how to videos, videos that depict procedures that doctors typical ly perform, such as removing toenails, teeth, stitches, and so forth. Vogel suggested that patients do not like to wait at do ctors offices and either do not like to pay expensive bills for simple procedures or do not have insurance, so they might turn to the Internet to learn how to do these procedures themselves. Finally, Kelly, Fealy and Watson (2012) examined the top 10 vide os on YouTube for nurse and nursing to see how the profession was portrayed, and three major nursing identities emerged: the nurse as a skilled knower and doer (4 videos), the nurse as a sexual plaything (4), and the nurse as a witless incompetent indi vidual (2). While the authors found it encouraging seeing some videos portraying the nursing profession in a
59 positive light, videos that created or maintained alternative discourses about nursing were perceived as damaging to the profession. Importance of YouTube to M edical P rofessionals Because of the increasing use and prevalence of social media, health professionals are slowly learning how to use the web in a professional capacity ; however, as health professionals enter new territory, there are many qu estions about how health professions should use these new tools and still maintain the professional standards for which they are known and to which they are bound (Holt, 2011). Greysen, Kind and Chretien (2010) warned health professionals, particularly you nger ones just entering the profession, to be careful about how they use social media, as this use leaves a digital footprint that can be hard to erase. They also said: We must go farther than curtailing unprofessional behavior online and embrace the posit ive potential for social media: physicians and health care organizations can and should utilize the power of social media to facilitate interactions with patients and the public that increase their confidence in the medical profession. (p. 1229) Evans (20 12), a family doctor, made a video about exercising and soon saw it go viral, watched by more than 2 million times and commented on extensively. Evans suggested that medical professionals have a huge opportunity to take advantage of the web and should seek to make content more interactive to engage with patients. Health videos could also impact the medical knowledge of health professionals. Dinscore and Andres (2010) reviewed various websites that offered surgical videos, which can be a great educational asset for surgeons. They discussed the pitfalls of these various websites and offered suggestions about how surgeons can discern between good content and bad. Robichaud et al. (2012) wanted to see if first year medical students were influenced by videos cr itical of the seasonal influenza vaccine.
60 They conducted an experiment in which the first group was shown a video that had a more scientific presentation critical of vaccines, and the second group was shown a video that used anecdotal evidence and media clips. The groups were surveyed before and after watching the videos to see if the video influenced their perception of the vaccine. Fortunately, the videos did not sway any medical students to change their views on vaccines, though a subset of the medical students on the pre test expressed some doubts about vaccines. The effect and use of videos by medical professionals has yet to be fully explored, as researchers have been far more interested in how videos could potentially affect pa tients. One thing th at is clear from the studies about health information and the challenging of medical stereotypes on YouTube is that many researchers believe there is a lack of quality health information on the Internet and recommend that professionals and organizations fi ll this gap by providing more videos. While this sounds good in theory, I believe in practice, medical professionals have far more barriers to posting content online than individuals do. Professional videos cost time, money, and effort, and medical organ izations may be more worried about protecting their identity and reputation and reducing their liability than offering useful information to patients. In the inflammatory bowel disease community, I have seen that doctors and gastroenterologists have been e xtremely slow in taking advantage of YouTube as a medium for education: thus, patients fill the gap. I have observed that individuals are better prepared to post as videos more cheaply and easily, often just by turning on their webcam and uploading the vid eo as soon as they hit Stop . Individuals are not burdened by professional codes of ethics or institutional review, and often work
61 solo, so they have few to no bureaucratic barriers to posting. Individua ls often have fewer inhibitions and are more readily a ble to discuss topics that medical professionals do not often touch (such as criticism of the US health system or Western medicine practices ), and there are few sanctions to individuals for posting inaccurate or misleading information. Hence individuals ov erwhelm the Internet with their content (for better or ill), and the dominant medical perspective becomes the minority in certain online spaces. Gaps in the YouTube R esearch To conclude this section on YouTube videos, it is important to point out the gap s in this line of research. Researchers have been particularly interested in the portrayal of health information through video s and have been distressed when the YouTube community challenges medical authority and medical knowledge. What has been missing in the research is an analysis of patient voices. Researchers have focused so much on medical information that they have missed the fact that many patients tell their stories through video, and these videos offer not just medical information, but also suppor t for others with that condition. In my experience online, many people have told me that they appreciate not just the medical information I provide, but more than that, appreciate just knowing about somebody else with the disease. Other evidence supports the idea that people desire more from the Internet t han just health information; they also desire social support (Lee & Hawkins, 2010; Walker, 2013). For many people, the Internet is the medium through which they first encounter other people with their sa me health condition. In one telling example, Sood, Sarangi, Pandey and Murugiah (2011), in their study of kidney stone disease videos (discussed previously), categorized videos as useful, misleading, and
62 personal experience. These personal experience vid eos were counted separately and did not factor into their analysis at all, other than a simple count. Cannot personal experience be useful or misleading to other people? Personal experiences of patients seem to occupy, in some researchers minds, a state o f lesser importance when it comes to scientific medical knowledge. Researchers also occasionally display a lack of understanding about how YouTube works, and their recommendations for how health professionals should use YouTube is contrary to the spirit o f the website. The most telling researcher misconception comes from Kelly, Fe aly and Watson s (2012) study of nursing videos and how the profession was portrayed. Because many of the videos portrayed the profession in a poor light, the researchers offered this criticism and recommendation: Although nursing s regulatory and professional representative bodies are not expected to engage in an online discourse through posting video content on YouTube, their remit includes the effective use of their statutory cl out to act to protect the profession from the propagation of immoderate and damaging representations of the nurse. This clout can be exercised by lobbying legislators to ensure the protection of the profession from such stereotyping. Such lobbying might in clude calls for even greater democracy in the process of moderating online YouTube content, with professional bodies having the decision making powers alongside corporate voices. (p. 1811) In other words, the authors did not like how YouTube ranked nursin g videos, and they did not want to play by the rules of YouTube: they wanted the nursing profession to have a say in the process of moderating online YouTube content (p. 1811). They believed that if their professional bodies are given decision making po wers alongside corporate voices that this will lead to a more democratized web. In actuality, I believe this would lead to a less democratized web. Videos are ranked according to how popular they are: how many times they are watched, rated, commented on, and shared
63 on other social networking platforms. Occasionally advertising is used to boost the popularity of a video, but most of the popular videos on YouTube did not get to the top through advertising, but by word of mouth, through the viral spread of th e video in online spaces: in other words, a very democratic process. Elkin, Thomson, and Wilson (2010), in their study of pro tobacco videos, found that many of them used imagery of specific cigarette brands. They argued that if cigarette companies do no t advertise online, but their brands appear online, then they are indirectly advertising by looking the other way when individuals advertise for them. The authors made a strange argument that if the videos are not sponsored by tobacco companies, then that means individuals are breaking copyright laws through the use of brand imagery. Breaking copyright laws is grounds for video removal from YouTube, so the authors recommended that people flag pro tobacco videos for alleged copyright violations. This argumen t is unusual because the authors are against the pro smoking message, and yet want to tackle that message by pointing out copyright violations ; in other words, helping protect tobacco companies own brand and image. The strategy of flagging videos for copy right violations would also likely be ineffective: it amounts to little more than fixing a leak in a boat by punching another hole in the hull so that the water can drain out. As meticulous as some companies are in flagging copyrighted material on YouTube, even Hollywood and the music industry cannot stop all pirating; if copyright ed imagery is deleted, nothing prevents it from being uploaded again in the future. A good example of how medical professionals often do not understand how the YouTube community functions is explained in the research of Hess (2009). In the case study, he examines what happened when the Office of National Drug Control Policy
64 (ONDCP) uploaded eight anti drug commercials on YouTube in 2006. Initially, viewers were allowed to comment on and rate videos, but the ONDCP quickly disabled these features when the videos were overwhelmingly rated negatively, and most comments challenged the authority of the ONDCP and federal government s war on drugs, instead championing a pro drug discourse . After disabling commenting and rating features which are central to the structure of how YouTube operates viewers responded by parodying the videos, uploading videos with counter narratives about drugs, creating videos that mocked the ONDCP, and re uploa ding the original ONDCP videos but with the comment and rating features enabled. While Hess was quick to conclude that YouTube s dismissive and playful atmosphere does not prove to be a viable location for democratic deliberation about serious political issues (p. 411), I offer an alternative explanation. YouTube as a com munity has unwritten and written rules about how the community should act and treat itself, and when people break those rules particularly traditional authorities the community may rall y against the authorities, rather than include them in the conversation. I have seen from personal experience that YouTube can be a space for serious discussion of medical issues, and some of the research about the quality of medical information in YouTube videos speaks to this as well. Traditional medical authorities must work with the community, not against it. Their status as authorities does not necessarily hold the same weight in the online world compared to the physical world. In fact, some research ers have suggested that if physicians collaborate with their patients, such as by interpreting medical information patients find online and by suggesting credible online information sources, that this will not only strengthen the
65 patient physician relation ship, but patients may receive higher quality medical care (Wald, Dube, & Anthony, 2007). The Interplay of People, Communities, and Technologies Because online communities involve so many different people, perspectives, concepts, and technologies, a theor etical framework is needed to organize how everything relates to each other. I find that prescriptive mass communication and health communication theories are often inadequate in explaining how online health communities work. Activity theory, an interdisci plinary framework, is one such theoretical viewpoint that proves especially useful. Activity theory has its roots in the ideas of dialectical materialism by Marx, but was developed by Soviet researcher Vygotsky as a theory of psychology in the 1930s, and l ater his work was expanded by his followers in the 1970s (Bertelsen & Bodker, 2003). The theory was a reaction against behaviorist theory that examined subjects and objects in isolation (Kuutti, 1995). Vygotsky criticized behaviorist psychology that examin ed how individuals act to accomplish goals in a laboratory setting, which he felt did not translate fully outside the laboratory. Instead, Vygotsky, and later other researchers, proposed looking at how mediators explained the subject object relationship (Bertelsen & Bodker, 2003). If objects are defined as the goal of action, then in the case of the online community under investigation, an object could be the acquisition of health knowledge. Activity theory posits that, instead of looking solely at how su bjects pursue objects through action (in this case, what actions people with IBD take to acquire health information about their condition), researchers should look at the broader context that shapes people s behavior.
66 Under activity theory, the unit of an alysis is not the subject object relationship, but rather, the unit of analysis is the activity, which is defined as the actions in pursuit of a goal (object) mediated by means (or tools), community, rules, and a division of labor (Bertelsen & Bodker, 20 03). While activity theory has been used extensively in education, scholars have been using activity theory to understand online communities and human computer interactions (Barab, Evens, & Baek, 2004; Baran & Cagiltay, 2010; Bertelsen & Bodker, 2003; Heo & Lee, 2013; Sam, 2012; Young, 2009). Activity theory has also been applied in the context of health, as in the case of Schaffer, Reyes, Kim, and Collins (2010) who used activity theory to understand how patients with type 2 diabetes self managed their chr onic condition, or in the case of Toth Cohen (2008) who used the theory to describe how occupational therapists use clinical reasoning when working with caregivers of persons with dementia. Figure 2 1. Activity triangle, adapted from Engestrm (1999)
67 Activity theory is not a theory proper with predictions and hypotheses (Kuutti, 1995), but a set of related ideas that assist in studying individuals and culture simultaneously (Sam, 2012). The main components of activity theory are visualized in the Figur e 2 1, the activity triangle. To make the components of this framework understandable, I will describe them in relation to the online IBD community. The basic relationship is between the subject (a community member) and the object or goal of action. In th e case of audience members of an online IBD community, an object could be emotional support or raising awareness about the disease. The outcome, hopefully, follows from pursuit of that object: succeeding in being emotionally supported or succeeding in rais ing awareness. Individuals do not pursue objects without the influence of other cultural forces (Sam, 2012). In this scenario, community acts as a powerful mediator: individuals, through participation in an online community, pursue objects. The subject obj ect relationship is also mediated by means or tools, which could be material tools (e.g., online technologies) or ideological tools (e.g., language; Barab, Evans, & Baek, 2004). The subject community relationship is mediated by rules of conduct, norms for how people should participate in online communities. And finally, the community object relationship is mediated by a division of labor: different people engaging in different actions in pursuit of the object. This entire system working together, then, cons titutes the activity.
68 Figure 2 2. One possible application of the activity triangle to the online IBD community Activity theory also distinguishes between different levels of activity. Activities are motivated by something; activities are made up of discrete actions (which have their own temporal goals), and actions are made up of operations (Kuutti, 1995). To define these terms with an example from the online IBD community: an activity might be providing support for people with chronic illness whic h is motivated by the desire to help other people. This activity is accomplished through the use of different actions, such as posting an encouraging message in response to somebody s illness story; the goal of this action is to provide support. That actio n is made up of smaller operations: logging onto the website, typing the encouraging message, then hitting post with the mouse. In my study I am not concerned with operations, but instead, the difference between actions and activities. Bertelsen and Bo dker (2003) differentiated between the
69 two by saying: Activity is realized through conscious actions directed to relevant goals. Actions are realized through unconscious operations triggered by the structure of the activity and the conditions of the envir onment (p. 305). In other words, the behaviors that people use to accomplish their goals are both conscious and unconscious but are always shaped by cultural factors. Kuutti (1995) argued, though, that the borders between activities and actions can be blu rry. The same action can be directed at many different activities. The action of posting a comment on a blog could contribute to the following activities: providing emotional support, sharing health information, raising awareness, or responding to conflict in the community. In a similar fashion, activities can be accomplished through different sets of actions. If the activity is sharing health information, the actions used to accomplish that goal might be: writing a blog post, recording a video interview wi th a doctor, or posting a link on Twitter to a medical study. The activity triangle as briefly described is designed to help think about the way subjects and objects are related (Roth & Lee, 2007). The framework might be particularly useful in examining the effect digital technology has on the way people undertake actions. Of importance to this study is how the use of new media technology shapes the online community. Wertsch (2002) argued: It may be important to take into consideration the possibility th at one cannot simply add asynchronous communication tools into an existing mix of social and psychological processes without changing them in fundamental, unintended ways (p. 106). Later I show how the interplay between subjects, communities, objects, and technologies affects the shape of these communities, the way technology is used to achieve goals, and how people are affected by the technology they use.
70 The Social Construction of Medicine Medical anthropologists have conducted considerable research int o the ways society and culture constructs and represents illness and medicine. Western medicine is often biased by biomedical perspectives that see illness as largely a biological problem that is best combated with rational, scientific, objective medicine. Medical anthropologists have shown, though, that how society constructs medicine has a significant effect on both the patients and the medical industry that surrounds them. This discussion is particularly relevant for this research, as the study of online communities is not just about how these communities are created and maintained using communication practices. How people with IBD view and conceptualize their illness will likely have a substantial influence on how t hese communities function or fail to fu nction. Many facets of illness and medicine are social constructions, so it is good to start by examining how disease itself can be constructed. Mol (2002) argued, in her study of atherosclerosis, that disease does not exist as a single, objective reality ; rather, multiple forms of the disease can exist in the same body, each of which are social constructions based on observable and experienced realities. Differences between these diseases, which may all go by the same name, can be slight to significant, d epending on who evaluates the disease, from the physician to the surgeon to the technician to the patient. In practice the body and its diseases are more than one, but this does not mean that they are fragmented into being many (p. viii). She argued that different diagnostic tests can reveal different diseases: a surgeon might see one disease, but a technician sees another. To make these disparate accounts of disease cohere, a variety of techniques can be used. Diagnostic tests, which might produce differ ent conclusions about the diseases, can be ranked in a hierarchy so that one test wins over the other.
71 Conversations between patient and physician can also condense these multiplicities as the two work to find a unified vision of what the disease is and how it can be treated. Perhaps this is why patients and gastroenterologists have such divergent views on how IBD is experienced. Dudley Brown and Baker (2012) surveyed both patients with ulcerative colitis and gastroenterologists (though not the same doct ors who treated the patients) and asked each group about their perceptions of the disease. They found that patients perceive that their disease is more severe than physicians perceive it to be. Physicians tend to overestimate patient control over the disea se and tend to underestimate the impact it has on patient lives. Patients reported an average of eight flare ups per year, whereas physicians estimate that three flare ups per year is average. Seventy percent of patients feel the disease is embarrassing, b ut surprisingly, given that the disease is associated with frequent accidents and bowel movements, only 33% of physicians feel it is embarrassing. The differing perspectives can probably be traced to the different experiences doctors and patients have with the disease. The patient has primarily her or his bodily experience, which is persistent and ever present, whereas the doctor sees patients intermittently, so may have less experiential knowledge about any one patient, but on the other hand, has a breadth of knowledge that comes from examining many patients. Treatment of disease is also contingent on many societal factors: the matter is more complicated than simply selecting a medicine as if it were a tool and applying it to the body to fix it. Surgery is inextricably linked to IBD as a treatment method, as a third of people with ulcerative colitis and up to 75% of people with Crohn s disease eventually have some form of surgery (CCFA, 2013a, 2013b). One of the most common, and
72 arguably the most invasive, is ostomy surgery, which is often the result of colon removal or the removal of a portion of the small or large bowel. Sharp s (2006) work on organ transplantation is illuminating here. Sharp articulated that Americans remain fascinated with organ transpla ntation, many considering it one of the great miracles of modern medical science. Admittedly, organ transplantation is more complex than ostomy surgery: attaching a foreign organ into a living body is more complicated than removing an organ from a living b ody. Ostomy surgery, however, is not afforded the same awe as organ transplant, even though both surgeries unnaturally extend life, permanently change the body, and have the potential to increase quality of life albeit with risks and complications. In fact , ostomy surgery is often considered disfiguring by health professionals, rather than refiguring, a term that does not carry as many negative connotations. While bowel transplants are possible, they are rare (Brown, 2009). Transplantation of the colon is rarely attempted, as the colon is not considered a necessary organ. Small bowels are sometimes transplanted, but only as last resorts, usually for patients who suffer from small bowel syndrome, a condition caused by removing too much bowel, resulting in poor nutrition absorption (Children s Hospital of Pittsburgh of UPMC, 2013). The organ transfer industry, as well as many recipients of organ transplants, considers organ transplantation a gift of life (Sharp, 2006). Death from IBD is possible from certain complications, but is rare ( Card, Hubbard, & Logan, 2003 ). For some people with IBD , though, some fates are worse than death, such as an untreated flare up, and ostomy surgery at the very least provides many people with a renewed quality of life, e ven at the cost of disfigurement. Sharp (2006) also explicated how taboos
73 surrounding organ donation are socially constructed and deconstructed. Organ procurement officials work hard at maintaining the anonymity of organ donors, and yet transplant recipi ents often connect with the organ donor s surviving kin: either psychologically through elaborate mental constructions, or personally by seeking out the donor s kin with a bit of amateur investigation work, thereby resisting the cultural taboo against cont acting donor kin, and reconstructing organ transplantation in a way that makes sense to the recipient. In a similar way, people with inflammatory bowel disease can resist the taboos against discussing defecation and chronic illness by reconstructing primar y bodily functions in a way that makes sense to them. Although Douglas seminal work Purity and Danger (1966) was primarily focused on explaining and affirming primitive religion, her discussion of dirt and pollution is particularly relevant here. Dougl as defined dirt as matter out of place and discussed how many things such as foods, bodily fluids, and sexual activities can be considered dirty if they are experienced in the wrong context. Both primitive and contemporary societies, she argued, are co ncerned with the separation of the sacred and the polluted. Through rituals, dirt can be put in its proper place, which creates order in the world. A dult society often has a problem with the discussion of excrement and waste, contributing to the stigma man y with IBD feel. And yet, expelling waste is a primary human function, something everybody does on a regular basis. Human waste can only properly exist in three places in America: in the body, in the toilet, or in the garbage can (but usually only in the c ases of soiled diapers or animal waste). It should not come into contact with a person s pants, and definitely not with a person s bedding. Much of the stigma people with IBD feel, I have noticed, comes not necessarily from
74 other people, but from themselve s. People seem to have a natural disposition against excrem ent touching their outside body . Excrement is put in its place through proper defecation rituals: going to the bathroom. That is the socially appropriate place to eliminate waste. Included in thi s ritual is the prelude, excusing oneself to go to the bathroom. Children are taught at a young age to either politely excuse themselves to the bathroom or to go on their own without asking for permission. Excusing oneself is meant to draw the least amou nt of attention as possible. If something must be said, saying I have to be excused or Let me stop by the bathroom real quick is better than bluntly saying, I have to poop! as kids sometimes say. Living with IBD is challenging, both for patients and outsiders, because it often involves a l ack of control over dirt . The social construction of IBD has been touched on by others, such as Defenbaugh s (2011) autoethnography about navigating the medical system which she saw as patriarchal and dehumanizing and reconstructing her body image in light of her diagnosis with IBD. I will return to this topic later in the study when examining how people with IBD use new media tools to reconstruct the illness in a way that makes sense to them. Theoretical Assumptio ns To conclude this chapter, I will outline the theoretical ass umptions I bring to this study. Every researcher has biases, and these assumptions reflect my biases. By revealing my subjectivities upfront , the reader can better assess the quality of the re search, not only in light of my perspective , but their own. Patients and medical professionals both have authority over the disease and the body, but this authority is relative and contingent. I disagree with the view that medical professionals alone are experts on disease and health , that patients are
75 subordinate to medical professionals when it comes to management of the disease, knowledge of the disease, and knowledge of how the disease affects the body. In general, medical professionals have extreme, b ut intermittent, authority over the patient s body, usually when the patient provides permission (except in cases when family members make medical decisions for patients who are unable to). Perhaps the most authority is given to doctors when the patient is under anesthesia during a procedure like a colonoscopy or surgery. In those situations, the doctor is in complete command of the patient s body and has far more responsibility for the body s wellbeing than the patient does. The patient, however, has a lon g standing authority over and knowledge of her or his body. The patient lives with the body every day, not the medical professional, so while the medical professional may understand, theoretically, how the body and disease should function, the patient unde rstands the body in a way the medical professional often cannot. Kleinman (1988) made a now classic distinction between illness and disease that is relevant to the discussion. Disease is the biomedical, empirical examination of a health condition, large ly the interest of doctors, whereas illness is the lived experience of a health condition, which is often not the concern of physicians, who are often train ed to legitimize an objective, real account of disease over the subjective, even untrustworthy, ac count of illness. This is not to suggest that researchers should swing the other way and place patients at the top of medicine and subordinate doctors to them. This is not about who is better or more authorita tive when it comes to health, but about rec ognizing that both patients and physicians have their proper place and proper expertise.
76 M edical professionals and patients each have expertise, but in different ways. Each group needs to be evaluated on its own terms. Patients should not be expected, nor do they have the training or abilities, to be knowledgeable in ways that doctors are. When lay individuals provide health information online, however, they are often viewed with suspicion by doctors and researchers and are held to the same standards of kn owledge dissemination as medical professionals are, regardless of whether or not patients are claiming to be medical authorities . While patients cannot be expected to be medically trained , it is reasonable, though definitely not a given, that they might un derstand how their bodies work . While many patients admittedly do not pay much attention to their own health, patients have the potential to establish in various communicative ways that they are authorities on their bodies. And just as patients should not be expected to be medical professionals, doctors should not be expected to understand fully what it is like living with the disease. While doct ors can empathize with patients especially after frequent contact with them, talking to them about their disease, a nd treating them they should not be expected to give the same kind of support that another patient with the same condition could give. Medical professionals sometimes openly distrust patient use of the Internet, as a few examples will show. Mukewar, Man i, Wu, Lopez, and Shen s (2013) research on IBD videos on YouTube is notable here. As with other YouTube studies previously discussed, their classification of videos was suspect: personal experience videos and patient education videos were considered separ ate categories, as if one cannot be the other. The authors concluded that most IBD videos had poor educational quality and argued that healthcare professionals need to upload more videos to fill the gap. While
77 the authors did say personal experiences with IBD should be highlighted, they recommended that physicians who have IBD should be the ones to share their experiences. Thus, physician knowledge was greatly privileged over patient knowledge, and personal experience videos by patients were deemed rather u seless. The authors implicitly acknowledged that videos could be a good way for patients to connect with other patients, but this is only good as long as they do not discuss anything that could be construed as medical information. From my experience, I fin d it difficult to have a conversation with another person with IBD without communicating at least a basic level of health information about drugs, treatments, symptoms, and tests and procedures with which we both have experience . In the same study, v ideos that promoted alternative treatments or those from patients who had negative attitudes regarding the failure of conventional medical treatments were discussed with suspicion, as these videos might potentially lead viewers away from conventional therapy (M ukewar, Mani, Wu, Lopez, & Shen, 2013). According to these researchers, then, patients should not provide medical information; should not share personal health information (only doctors with IBD should do this) ; and should not criticize the medical establi shment for fear that they might discourage others from seeking professional treatment. What is left to discuss regarding patient health ? Researchers Fortinsky, Fournier, and Benchimol (2012), when evaluating online resources for patients with IBD, acknowl edged that many patien ts use social media for support but were fearful that some people with IBD advocate for non evidence based treatments on social media sites, which other patients could be directed to with the click of a button. Their suggested remedie s to the problem of inaccurate health information
78 included: accreditation for health websites (although it would be difficult for such accreditation to keep up with the myriad patient websites produced and updated every day) and recommendations that physic ians ask patients about what they find online, even providing a list of websites they use so that they can assess the quality of the websites. Given how strained doctors are for time during office visits, assessing website credibility for patients seems li kely to be low on the list of priorities. On the other hand, the researchers suggested that physicians do not downplay the significance of the Internet or te ll their patients not to use it; that might only encourage them to use it more and lead them to unt rustworthy sites. T here is a prevailing attitude within that medical community that physicians are best qualified to evaluate and disseminate health information for fear that patients will uncritically accept and act upon what they read . This is not to sa y that scholars and medical professionals have to accept everything patients write online with the same level of trustworthiness that is usually afforded to physicians. In a recent study, a colleague and I examined websites that discuss cures for IBD (Froh lich & Birnbrauer, 2014 ); the disease, again, is considered incurable. The purpose of that study was not to assess what amount of online health information is accurate or inaccurate: those studies have been done, and not surprisingly to any native of the I nternet, lies abound in this space. Rather, this study, which will be published in a medical journal primarily read by gastroenterologists, was about explaining how IBD cures are constructed, what rhetorical strategies patients use when discussing their cu res, and what rhetorical strategies medical professionals use when discussing cures. One hope I have for this study is that medical professionals at least understand how patients view their own disease and treatment, even if they do not
79 agree with these un tested and unproven therapies. For medical professionals and patients to have a shared worldview, one that is conducive to good health, there has to be some give and take from both sides. That is one reason why I am more partial to the philosophy of share d decision making, which can be defined as a process in which the physician shares with the patient all relevant risk and benefit information on all treatment alternatives and the patient shares with the physician all relevant personal information that mi ght make one treatment or side effect more or less tolerable than others (King, Eckman, & Moulton, 2011, p. 31). The goal of this model is to find treatment options that fit with patients ethical values and lifestyle in the hope that more congruent treat ment options will lead to better healthcare. Cribb and Entwistle (2011) argued that shared decision making approaches, by recognizing the autonomy and responsibility of both health professionals and patients, aim for an ethical middle way between pater nalistic and consumerist models of clinical decision making (p. 210). From my personal patient experience with dozens of doctors and at least a couple hundred medical professionals, I can affirm that when health professionals have worked with me in the management of my disease, I have felt better about my treatment options, compared to the times when health professionals suggested treatments with little consultation with me about my preferences. The diseases Crohn s disease and ulcerative colitis a re socially constructed categories that describe a collection of symptoms. While these diseases do have biological causes, because these causes are not completely understood, medicine operates with a considerable degree of approximation and
80 estimation. Bec ause the course of the disease varies widely from person to person, one could argue that each condition is a new disease unique to that person, a disease with an occurrence of one, though to see every expression of the disease as completely unique would be problematic for many pragmatic reasons. So while these diseases do have an objective, biological basis, I believe that some aspects of the disease are socially constructed . For instance, some symptoms, like lack of bowel control, are more socially embarra ssing than symptoms like bowel pain that are easier to hide. Embarrassment is a social construction; I find stomach pain to be more physically bothersome than accidents, and yet accidents, especially in public, can be more traumatizing than a hidden sympto m. Because IBD is at least partially socially constructed , patients can create and recreate the disease in opposition to or in concordance with society s categorizations. As will be shown later, some patient communities are actively trying to shape the d isease so that it is viewed in a positive, rather than negative, light. I believe that conflicts between physicians and patients can, and often do, arise when the patient tries to manage hi s or her version of the disease and the physician tries to treat hi s or her version of the disease. For IBD, this can occur when patients believe that diet plays a significant role in the course of their disease and want to adjust their diet accordingly to best manage the disease, but the ir physician denies or minimizes t he role of diet as a cause of or factor in the disease, subordinating diet to pharmaceutical treatments. The online world can be just as real as the physical world and frequently intersects with the physical world. Additionally, the online world is not a singular construct, nor is the physical world. A person s life world (for lack of a better term) can
81 consist of multiple intersecting and independent online worlds, as well as multiple intersecting and independent physical worlds. My physical world of s chool is often completely different than my physical world of home. I have nearly separate social spheres in both worlds; I dress differently for school than I do when I am at home; I talk differently at school than I do when I am at home; and my comput er use at school is often very different than my computer use at home. So while the terms online and physical denote a binary division of the two worlds, that binary should be seen more as pragmatic writing shorthand than as a strict representation of an abstract theoretical concept. How these two spheres intersect and overlap will be explored in greater detail later in this dissertation. Research Questions The research questions guiding my study are as follows: RQ1: How do people with inflammatory bow el disease create online communities using multiple social media platforms ? I want to understand specific strategies people with IBD use to create their community. The mere fact that a website has a forum or chat room or puts a comment section at the end of a post does not create a community. While the structural form of Web 2.0 technologies helps in large part to facilitate online communities, managers or moderators of these communities still must intentionally work at creating the community. For my maste r s thesis, I studied online amputee support groups on Facebook, of which there are hundreds, but I found that many of them are barely used at all. Hence, I learned that just because the tools are available to create a community does not mean a community w ill actually come into being. Examining the creation of online communities is a multifaceted endeavor, looking at technological structures and the
82 shared construction of reality, as well as the ways that the idiosyncrasies of the disease and patient experi ence shape the community. Because this dissertation considers multiple Web 2.0 platforms, I am especially interested in how communities are constructed across these platforms. Just because a community leader utilizes a variety of platforms such as a blog, Twitter, and Facebook group does not mean that the audience is homogenous across all platforms. I suspect that the more platforms a leader uses, the more multiplied the community becomes : in other words, they might actually be constructing several differe nt communities than one overarching communities . These communities, then, may be unified or disjointed, the only commonality across all of them being the community leader and the disease under discussion, not necessarily the community members. RQ2: What c hallenges exist in maintaining online communities for people with chronic illness ? This question follows naturally from the first. There could be many challenges, from technical to societal, in maintaining an online community. IBD as a disease offers chal lenges to community, as the disease is cyclical in nature ; it goes through periods of remission and flare up. Remission could last months or eve n years. If somebody enters an IBD community when she or he is sick and seeking help, would the person remain in the community once the disease settles down? Under what circumstances? Challenges can come from the disease itself, personal factors, societal factors, or even disagreements or conflicts generated within a community. RQ 3 : How do community leaders relate t hemselves to the medical establishmen t and existing support networks ? When comparing patient, medical, and non profit communities, there can be considerable overlap between the goals of a community, the content shared and
83 created in that community, the pe ople who use that community, and the technologies used in creating that community. From the community leader perspective, the work they do online can complement, challenge, and even replace educational work often done by medical professionals , and the supp ort structures they create may complement or replace support structures maintained by established non profits. I want to understand from the community leaders perspectives how they define their roles in regard to these existing medical establishments. Kno wing how community leaders view their work will help the research community better understand if the animosity medical professionals sometimes feel toward online patient health content is justified or not. RQ 4 : In what ways do people s physical health sphe res intersect and overlap with their online health spheres? While this ethnography primarily examines the online environment, it is also important to understand the ways in which the online and physical worlds of patients and community leaders intersect w ith each other. The disease affects a person s body primarily in the physical world, and yet the disease also affects a person s mental and social health, which transcends both the physical and online spheres. Thus, it is impossible to understand an online community without taking into account the offline effects of the disease as well. RQ5: In what ways do people use social media technologies and platforms to construct or reconstruct inflammatory bowel disease? The purpose of this research question is to test my assumption that disease is, at least in part, a social construction. This research question has two parts. First, in what ways do people with IBD construct inflammatory bowel disease as a disease? Or to go one step further, in what ways do they rec onstruct the disease? Do they challenge the way the disease has been portrayed and characterized by medical professionals and
84 society at large? And if people with IBD are constructing or reconstructing the disease, what role do specific social media techno logies and platforms play in this construction? Do new media technologies facilitate or shape the way disease is defined and discussed?
85 CHAPTER 3 METHODS To answer my research questions, I conduct ed a digital ethnography. Medical ethnographies are often multifaceted in nature, examining people with a particular illness, the social structures surrounding their disease or illness, the medical industry, and how people construct their illness identities based on personal experience and societ al pressures. Thi s ethnography is focused primarily on the communication practices of people with IBD. While the disease itself plays an important role in the shape of these online communities, online communities are constructed primarily through communication practices: o ne person speaking to many, many speaking to many, and one speaking to one. Because of the wide range of media and platforms people with IBD have at their disposal for communication, this ethnographic approach will shed much light on how people with this d isease connect with each other. Traditionally, ethnographies are conducted by selecting a group to study, going into the field, and immersing oneself in the culture, the product of which is a thick description. E thnogra phers use a variety of methods suc h as interviews, focus groups, surveys , and participant observation to gather data. Digital ethnographies are obviously different than traditional ethnographies in one key respect: there is no geographic place where the ethnography happens. The digital e thnographer confines him or herself to specific websites and Internet co mmunities but could also study the intersections between these online communities and the offline world, such as the structures in the physical world that enable or driv e the creation of online spaces. I n the case of this project, one real world driver of online IBD communities is the physical manifestation of the disease in people. Other drivers could be perceived failings of the
86 medical community to properly educate patients, perceiv ed failings of IBD focused n on profits to offer face to face support groups, or stigma experienced by people with IBD. This study borrows from the ethnographic techniques o f anthropologists while still relying on tried and true communication research prac tices, such as interviewing the producers of media, analyzing the texts they create, and engaging with the audiences of these texts. This digital ethnography is also influenced by the work of Boellstorff (2008), Hine (2008), Leander and McKim (2003), Murth y, (2008), and Sveningsson (2004), who detail ed how ethnography can be conducted online. As the digital application of ethnography is still developing , my methodology was refined once I got into the field and began engaging with the online community. In this chapter I will focus on what I did to collect data for this project; in Chapter 8, I will take a step back by analyzing what I would do differently next time, offering my recommendations for how digital ethnographic techniques can be improved for futu re projects. Ethics of Digital E thnographies Lurking in the S hadows: The A mbiguity of C onsent A common approach researchers take to studying online communities is to behave like a lurker, that is, somebody who observes and follows an online community w ithout ever contributing to the community publicly. Murthy (2008) warned against covert ethnography, passively analyzing online texts without ever declaring the presence of the researcher to the researched. Murthy suggested that researchers make their pr esence known to their participants and said that the solicitation of dat a in the form of video diaries offers interesting data gathering possibilities as people present their private affairs in a public forum. Murthy also suggested that researchers create pages in social networks specifically for their project or have respondents send them
87 video responses to question prompts. While these methods are clearly one way to avoid being a passive lurker in an online community, for this study I took a more n aturali stic approach and studied the online community as it currently exists: requesting that people provide answers in a public forum would change the way the online community functions. Sveningsson (2004) agreed that studying covertly allow s the researcher to h ave as little influence on the online environment as possible. Studying the natural community, though, was not entirely possible for me as I maintain ed my own IBD community online, and some of my participants were familiar with it (When I surveyed comm unity members about what online IBD communities they were involved with, some of them mentioned UCVlog) . When I say that I studied the community naturalistically, then, I am not implying that my online presence disappear ed during this project; rather, I ca ll ed as little attention to my own online activities and the research as possible. Community members would have known that I was conducting research if they saw the recruitment messages soliciting participation in the online survey ; however, it was impossi ble to tell everybody in the online community that their posts were being monitored primarily because the definition of the community is ambiguous , as I will explore in Chapter 4 . If somebody left a comment on a video three months ago, but never left ano ther comment again, is s/he still part of the community? If s/he continues to consume others content, lurking in the background, s/he might perceive her or him self to be part of the community, but would active members in the community perceive that perso n as part of the community? Additionally, letting people know they are being researched depends on one s definition of public. In the physical world, people who mill around a community square
88 are part of the public, and as such, are not entitled to priv acy when it comes to people taking pictures, video, or even a researcher sitting on the sidelines making notes about what s/he sees. Should a public website that anybody can access and to which they can post comments on be seen as an online corollary to ph ysical world public place s? I tend to think so. In the late 1990s , when large numbers of people were accessing the Internet for the first time, many people were worried about privacy and keeping their identity hidden (Clarke, 1999; Hoffman, Novak, & Peralt a, 1999). With the rise in popularity of social networking sites such as Facebook that promote a culture of disseminating truthful information, and with more people constructing online rsum s for the purposes of securing jobs, people s definitions of priv acy are changing, as more people are willing to disclosure private information in public, online environments like social networks (Miller, 2008; Waters & Ackerman, 2011). Some engagement with the online community was necessary, particularly when I announ ce d to the community that I was looking for people to survey and interview. The issue of consent to research, though, is ambiguous; Sveningsson (2004) suggested that researchers ask the owner s of websites for permission to study the online community, thoug h this is fraught with gray as website creator s do not necessarily speak for everybody who uses their website s . From my experience with Institutional Review Boards , I have found that if data are available publicly in online spaces, then the researcher does not need permission to use it, similarly to how letters to the editor in magazines and newspapers are often considered part of the public sphere and are fair game for researchers. While I do use data from public websites in my report , I endeavor to prot ect people s identities as much as possible by only using screen names
89 of people who give me permission. I did not collect data from areas of the Internet that were clearly meant to be private, such as chat rooms, closed Facebook groups, and personal corre spondence (such as emails and Facebook messages) that was not initiated in response to research questions. While the primary responsibility falls with the researcher to protect individuals as much as possible, readers of any research report bear some resp onsibility for not going to extreme lengths to uncover the identities of individuals quoted in the paper. Of course, even hiding screen names and website URLs does not perfectly protect a person s identity, especially when a direct quotation is used. The r eader, though, bears some responsibility in not seeking out, contacting, or harassing a person whose comment appears in a paper. Nobody can be protected completely from a malicious stalker, though this problem is not new to Internet research. I believe mos t people in society are reasonable and perhaps do not have the time, resources, or desire to cause trouble for some one whose name or identifying information is published in a public forum. Hine (2008), however, cautioned researchers to take care with how they protect people s online identities. Normally, the ethnographer will change all the names of the participants to pseudonyms; that technique is certainly possible with this ethnography. People often construct their online identities in part by the choic e of a handle or nickname ; however , by changing a nickname to something else, does the research er strip the person of part of his or her online identity? For this study, I used online usernames , but only with permission . The community leaders, because they are so few in number, would be hard to keep anonymous, even with pseudonyms. Some of them
90 have created unique communities. If I were to talk about a young female blogger who works for the CCFA and writes about marathon training, it would be fairly easy to figure out who that person is (in this case, Lauren, one of the participants I will describe in detail later). I asked all the community leaders I interviewed if I could use their actual names and website names in this research report. I explained to th em the difficulty of keeping their identity secret, though if they wanted me to, I would use a pseudonym. All community leaders gave me permission to use their online name (all but one use their real names; for the one who does not, I use the screen name b y which she is known) and permission to reference their websites directly (both by the name of the website and by URLs to the website) in this report. For people with whom I have no direct involvement (such as when I quote a comment on a video or blog pos t), I used no name at all because the use of their material, even though it is public, is involuntary. It must be noted, though, that not all material from these individuals would likely be considered sensitive to a reasonable individual. A comment on a bl og that says nothing more than Nice post! This really helps me manage my disease is much less revealing than a 10 paragraph novella in which a person details his or her history with the disease, down to dates of diagnosis, tests, surgeries, and listing o f medications used in the past and the present ( N o exaggeration: every once and a while people have posted their life story on my websites). Direct quotations are used in the paper to the extent needed to understand the flavor of conversation, particularly if somebody has an interesting way of phrasing something, but comments that reveal personal information not directly relevant to the analysis (such as email addresses or phone numbers) were excluded, trimmed, or
91 summarized in a way to obscure who said it. As I intend to be a part of this community for a long time, both professionally and personally, I have take n extra precaution s in protecting the rights of the people I study, who on the one hand are my research participants and on the other hand are my fr iends and colleagues. Gaining A ccess to a C ommunity For the ethnographer who is allowed to study the online community in some explicit way, the next ethical issue that arises is the question of authenticity and trust. Often before digital ethnographers ca n gain access to a community, they must first be a part of the community. If a researcher is studying a gaming community, that usually means creating a game character or profile and interacting in the community for some time to be seen by members of the co mmunity as an authentic and trustworthy person (Hine, 2008). Fortunately, because I have been a part of this online community for so long, I did not have a problem with being seen as authentic or trustworthy. Some of the people in these communities were al ready familiar with my work with UCVlog , and for those who were not, I clearly refer red them to my website so they could confirm who I am. Even though I have extensive experience with this community, I could not take for granted that I would be fully accep ted in all corners of the community. Each interaction with community leaders and audience members provide d new opportunities to establish trust , especially when I recruited participants with whom I had no connection . Communities under Examination Before discussing ways in which I gathered data for this project, I will explain how communities were discovered and chosen for study. Given my experience in the online community for six years, I was already familiar with some communities. While there is a divers ity of voices in the online community, the community is not so large that its
92 borders are difficult to find. I began by selecting communities with which I was familiar and that I thought would provide good data for the study. Along the way, I found other p ossible communities: sometimes my participants suggested communities to study. Other times I found links to other communities in Facebook support groups or blogs. I even spent some time on search engines looking for newer communities that might have popped up in recent months. The selection of communities was based on the following criteria: The community had to be focused, at least in part, on people with IBD. Some of the communities were more focused on living with an ostomy; the audience for these com munities might be people who have ostomies for reasons other than IBD, such as colon cancer. That was okay, as the leaders of these communities all had IBD and still catered some of their content to people with IBD. In chronic illness communities, it is of ten hard to find people who only have one health condition; often people have multiple related conditions, so trying to find a pure community that is only focused on one health condition is difficult. Even if such communities could be found, I am not sur e it would be desirable to study such a narrow segment of the illness experience. The community had to exist across two or more social media platforms, such as blogs, Facebook pages, Twitter accounts, YouTube channels, and so on. As mentioned already, pre vious research often examined singular health communities, like a message board or forum. But with the popularity of social media, many communities now utilize a multitude of web platforms, so the old way of researching a single platform to understand how a community functions is no longer desirable or
93 meaningful. What this means for this project, then, is that people with IBD who created a community using only one social media platform, like a WordPress blog, were not contacted or studied. The social medi a platforms had to show evidence of an active community. Many patients write blogs and have Facebook pages, but if nobody ever comments on those platforms, can it be said that a functioning community has been created? I argue no. While the voices of single patients writing about their experiences are important, they were not relevant to this study as I was studying communities, not individuals. Evidence of an active community varied from website to website. In some places, communities were extremely active, with people posting stories every day (or several times a day). Some websites got considerably more traffic than others and always got comments on their posts. Other websites had smaller communities with fewer weekly comments. Some websites used many soci al media platforms; others used fewer. In other words, the communities under investigation did not have to be uniformly active, but I needed to see tangible evidence in the form of comments, likes, shares, subscriptions, and other social media activity mar kers that the community was active. The community had to be, at least in part, public. There are ways to create private communities online, such as through message boards or social networks that require log in accounts or passwords. I explicitly only stud ied communities that were public as these were easiest to access, not just for me but for participants of these communities. While closed private online communities can be very successful and active, in my experience online, the most vibrant and largest IB D communities were open. Even though many social media platforms require people to have an account to
94 participate, these same communities are often public to people who just want to read and not participate. Facebook offers a case in point: t here is a dist inction between Facebook groups and Facebook pages (Pineda, 2010). Facebook groups are semi private gathering spaces for like minded people that require membership to join. Membership can be open to anybody, or it can be administered and regulated by those in charge of the group. Pages, on the other hand, were originally intended for celebrities, businesses, websites, and other properties that may have a following. The content on Facebook pages is often public, even to people who do not have Facebook or are not signed in to Facebook. Anybody can follow a page simply by Liking it (rather than joining it, as with groups). This criterion of only studying public communities ended up being a moot point: in all cases, community leaders made the entirety of their content open to the public. No community contained a private section (excluding emails and private messages that take place between community leaders and audience members). While not an explicit criterion of inclusion, I also tried to find a diversity of voices. Based on my experience online , most of the IBD community leaders (and participants) are women , even though the disease affects each sex about equally . When I first started telling my story online, I had assumed women would be too embarrassed to ta lk about their bowels as they would be more self conscious of their body image than men; thus , men would have the dominant voice online . I have found this not to be the case; women community leaders have actually told me in private that they appreciate the work I do in the community, as male voices are few and far between, so I am not the only one who has made this observation. Additionally, most community leaders are young, in their 20s to 30s. This is not surprising as the demographics of YouTube,
95 blogs, Facebook, and Twitter are skewed toward younger demographics, though older adults increasingly make up a larger share of the audience (Duggan & Brenner, 2013). I spent considerable time, then, trying to find male voices and voices of older individuals. W hen I identified a possible community, I first spent some time skimming through the community s websites and social media platform to see if the community fit these criteria and if it would provide good data for the study. Then I sent an email to the commu nity leader requesting her or his participation in an in depth interview (Recruitment messages are found in Appendix D ). I contacted community leaders between the beginning of October and early December 2013, a two month window. During this time I contacte d 22 community leaders; in the end I interviewed 12. Some people never responded to my requests. More often, however, people did respond and expressed interest in the project, but for many reasons the interviews never happened. Several times I had intervie ws set up with community leaders, but before we conducted the interview, the community leader would get sick and cancel. This is the difficulty of working with people with chronic illness. Many of my possible participants were hospitalized because of a fla re up of their disease, and while I tried following up with a few of them, some of them were sick for weeks on end. I know from personal experience that recovering from a flare up, especially one that hospitalizes a person, can take weeks. So in these case s, when it was clear that the person was sick, I stopped contacting him or her and let the person recover. Once I had interviews finalized, I began collecting data and analyzing those communities in more depth. I did not want to include data from communit ies in this report if I had not first talked with the community leader; even though these communities
96 are public, as I discussed above, there are ambiguities in studying online public spaces. A breakdown of the communities under investigation can be found in Appendix E . A Variety of Data Collection Methods Even though this ethnography is focused on a very specific aspect of the disease how it is communicated between people with the disease many opportunities for data collection exist ed . I gathered data fro m diverse sources so that I could best answer my research questions. Using multiple data collection methods help ed triangulate the data. Triangulation allow ed for a greater depth of understanding by illuminating multiple aspects of the phenomenon , and it a lso ensure d that the analysis of the phenomenon under study was not biased by any single data collection method (Creswell, 2013; Maxwell, 2013). The data for this study came from five general areas: material created by community leaders ; material created b y audience members; data collected through direct engagement with community leaders ; data collected through direct engagement with audience members ; and my personal experiences within the community . Material C reated by C ommunity L eaders The 12 community l eaders under examination have created much material online, providing me with many rich texts for study. Community leaders utilized the following social media platforms in the creation of their communities: blogs, Facebook, YouTube, Twitter, Instagram, Pin terest, Flickr, Vimeo, and a few smaller social media platforms. When scholars conduct online research, a common practice is to scrub the data or record it in some fashion. The idea is that websites are not static and can change on short notice (or disap pear altogether) so capturing digital data is one way of freezing a website in time. Digital data can then be analyzed at a later time, and
97 should questions ever arise in later stages of project execution, the researcher can always go back to this captur ed data; if data were not captured and saved in some fashion, then the researcher runs the risk of going back to that specific website and finding the data in question missing. Capturing data from so many websites and social media platforms, however, prov ed challenging and time consuming. Websites (like personal .com or .org addresses) and blogs were the easiest to capture. Some of this was done by hand in the beginning, copying pages one by one and saving them on my computer. Later I found a computer prog ram, WinHTTrack Website Copier that captured this data for me, though the program often took 8 16 hours to capture an entire site, creating tens of thousands of files in the process. Data from social media websites, like Facebook, Twitter, and YouTube, we re much harder to capture. I could not find a program that worked for my purposes, so this data had to be captured manually. I did not, however, capture all the possible data from these websites for several reasons. First, capturing data manually is time c onsuming, and had I been striving for exhaustive digital records of every community I studied, I would likely still be capturing data instead of writing this report. Second, and more importantly, not all data from these websites needed to be captured or wa s relevant to this study. I captured data specifically related to my research questions. Third, similar content was present in all of these communities; capturing every piece of content every Facebook post, every comment, every photo would have created a c orpus of overlapping and unnecessary data. Even being selective about what data I captured, I
98 still had several thousand pages of data collected from these communities, more than enough to answer my research questions. Material C reated by A udience M embers Most Web 2.0 platforms YouTube, blogs, Facebook, and Twitter make it very easy for audience members to respond to community leaders , often in the form of comments left on material posted by community leaders , such as individual videos or blog posts, or as responses to questions posed in Facebook groups or Twitter. I captured thousands of comments from these communities, but I could easily have captured tens of thousands. Again, I captured comments that were relevant to my research questions. Comments that were off topic (perhaps referencing recent pop culture events, like a new TV show) were not necessarily irrelevant as they may have be en part of ho w that community functioned. But comments that constituted spam were not relevant (e.g., comments that advert ise unrelated products, link to websites that might only peripherally be related to IBD health, such as a link to Viagra ) , or comments that were incomprehensible due to language differences or technical mistakes, such as somebody posting a comment after on ly writing one word, were not relevant. While text comments are the most common form of audience engagement, audience members also posted other content in these communities. Sometimes people uploaded pictures either comedic photos or photos of themselves to platforms like Facebook. Sometimes people submitted videos to community leaders, who then edited the video submissions together and posted them on YouTube. Some of this data was captured and will be referenced in the results chapters. However, personal photos and the like, even though they were posted to a public space, will not be used in this report or future publications without the express written permission of the people who
99 uploaded that content. The line might seem arbitrary, but I feel more comfo rtable quoting text based comments from a public forum than including photos from a public forum. Data C ollected through D irect E ngagement with C ommunity L eaders The study of each community began with a cursory examination of the posted materials on the v arious Web platforms in use by that community. Once I had a sense of what a community leader was doing with his or her community, I contacted him or her for a possible interview. The interview was long form and semi structured. A detailed interview guide i s found in Appendix B . Some interviews were conducted via Skype, and some were conducted over the phone. The medium of the interview did not seem to affect the flow of the interview or the nature of the conversation we had. Interviews were conducted betwee n October and mid December, 2013. Interviews ranged in length from 61 minutes to 104 minutes, with an average of 76 minutes. I later transcribed all interviews. Some interviewees were later contacted through email for minor clarifications of some of their answers. Data C ollected through D irect E ngagement with A udience M embers I could gain a good sense of how audiences interacted in a community by examining the material they posted. Through talking with community leaders, I learned more about how audiences communicated among themselves or with the community leaders. However, one concern I constantly had was: are these public expressions of the audience actively reflective of how the entire audience feels or acts? Could there not be silent audience members wh o actively follow the community and yet never contact anybody directly? I created a short survey, then, to try to gather data from the potential
100 silent part of a community, as well as to get opinions from the active members of the community, maybe learning things that they would not or had not expressed publicly. I created an open ended online survey, which was distributed in many of these communities (The survey text can be found in Appendix C ). I did not post the surveys myself: rather, when I interview ed community leaders, I asked them if they would post recruitment messages either on their blog or Facebook group. Not every community leader posted my recruitment messages, which did not pose a problem for this study (Four posted the recruitment messages, and in one community, the recruitment message was reposted six times on other websites not studied for this project). Even if all community leaders had posted my recruitment message, the response would not be representative of any larger population. This was not a quantitative survey, so the notion of following proper sampling techniques was not relevant. I simply wanted to get additional qualitative data from a portion of the audience to assist in answering my research questions. The survey was created i n Qualtrics and was open from October 16, 2013, to January 24, 2014. During this time, 152 people attempted the survey: several respondents were eliminated from this pool as they did not consent to the study, did not have IBD, or submitted blank surveys. T his left 139 useable responses. The average age of respondents was 30.4 years. The split between sexes was extremely unbalanced, as I had expected it would be: 122 individuals were female (87.8%), and 17 were male. Even though ulcerative colitis and Crohn s disease exist is roughly equal numbers in the United States, the respondents also skewed toward diagnoses of Crohn s disease: 77 people had Crohn s disease (55.4%), 45 had ulcerative colitis
101 (32.4%), 14 had indeterminate inflammatory bowel disease (10.1% ) and 3 were still in the process of diagnosis (2.1%). From this pool of 139 respondents, though, only 101 provided any useable qualitative data, which is what I was most interested in. Of this group, 52 people had had some form of surgery, ranging from bo wel resections to colectomies to ostomy revisions to surgeries necessitated by complications caused by previous surgeries. Personal E xperiences within the C ommunity Observation of a culture is one of the prima ry ethnographic data collection methods, and t he researcher can take the stance of a complete participant to a complete observer, with gradations in between (Kawulich, 2005). My status as a researcher in this community does not fall neatly into categorizations like complete participant or participa nt observer. I have done all the activities that my informants do: I created websites, I posted updates about my health, and I interacted with my audience through social media. However , I did not have much direct interaction with the communities in questi on before I began this project . In the past I have comment ed on their material , and sometimes I have repost ed their videos on my blog, but I did not collaborate with them on projects and did not follow their every posting. For most of this project, then, I approached these communities primarily as an observer who happens to do all the things they do but in a mostly separate online sphere. I have a wealth of personal experiences from which to draw upon with this project. I have years of online postings that could easily be used as data in this study. This dissertation is not, though, about my community. I do not think I could be critical enough of my own community to study it alongside the communities of others. In the following chapters, then, I will refere nce my experiences when they are relevant to the
102 discussion at hand, either to confirm that something happening in other online communities also happened in mine, or to contrast my experience with the experiences of others. B ecause of my place in this comm unity, it is impossible to be truly impartial about how these other communities operate . Being an impartial scientist, though, does not fit my code of research ethics. I embrace my participant status and realize that my subjective experience will ill uminat e many of my observations but at the same time will bias me to be favorably disposed to the work the online community is doing. Data Analysis Because the goals of ethnography are description and explanation, a variety of qualitative data analysis techniqu es were used to uncover themes of interest. Throughout the data collection phase, numerous field notes were created, which include d both my observations of these communities as well as impromptu analysis of items of interest (Emerson, Fretz & Shaw, 2011). These notes, as well as my interview transcripts, survey data, and textual materials, were read and reread to fin d commonalities across the data as well as contradicting examples . Additional ways of analyzing qualitative content include: drawing codes ou t of the data inductively; using a priori theory to find meaningful data points; and identifying keywords, phrases, or concepts that are of interest to the researcher (Hsieh & Shannon, 2005). While I employed some of these analytical techniques in sorting through the data, my goal was not to reduce the data to a handful of codes or themes. I first identified themes of interest ( partially arising from theoretical work conducted before the study began, elaborated in Chapter 2, and partially from inductive ana lysis of the data during and after the collection period), and then I sought to fully understand what those themes meant and what participants meant when they answered my questions. My goal
103 was to find rich and deep explanations for what I observed. My ana lysis started with an interpretivist stance, as elaborated by Hijmans (1996). My personal experience with this emerging online community was vita l to understanding how it works . Morgan (1993) argued that qualitative content analyses can involve counting c odes, as some counting is necessary to describe the dataset for the reader. He pointed out that many qualitative researchers implicitly count their data when they make statements like, Most people talked about Subject X or Few people mentioned having a problem with Y. Some of my analysis, then, involved counting instances of theoretically interesting responses, the purpose of which was to help describe and explain the data I have, not t o conduct statistical analyses . Institutional Review Board Protocol Upon approval of the dissertation proposal, I had sought IRB approval. While some IRBs require researchers to get approval before examining public data (Whiteman, 2007), UF s IRB did not require such approval and posed no problems in this regard. There ar e many supposed risks with qualitative interviews, particularly when the interview has less structure and involves divulging very personal information (Corbin & Morse, 2003) . The IRB did not have any major concerns about my study and only recommended small wording changes to my documents. A detailed list of recruitment messages and informed consent documents is found in Appendix D .
104 CHAPTER 4 RESULTS : THE CONSTRUCTION AND MAINTENANCE OF ONLIN E COMMUNITIES Before examining the research questions about how p eople interact with each other within communities, between communities, and with other medical support structures, it is important to have a grasp of how these online communities are created in the first place. In the first half of this chapter, I will pro vide data to answer Research Question 1, which asked how online communities are created using new media technologies. Then I will examine the other side of the phenomenon, providing data for Research Question 2: threats to the maintenance of these communit ies. Note: throughout this chapter and the next two, direct quotations that come from online material posted by community leaders, comments left by audience members, and responses audience members provided to the online survey are used as is, with all pu nctuation, spelling, grammar and spacing left intact. I prefer this style of quoting textual material, as opposed to correcting writing mechanics or writing [sic] after mistakes for several reasons. First, correcting another person s writing can have the u nintended effect of insulting the writer by pointing out that something s/he wrote is wrong. Second, I believe some people intentionally write in a more relaxed, less formal way when communicating online. Finally, while poor writing mechanics can obscure the meaning of what a person intended to say, or even make the text incomprehensible, none of the quotations used in this project have such egregious spelling, grammar, or punctuation so as to make the quotation unintelligible. How Online Communities are Created Before I explain specific aspects of the creation of online communities, I will briefly describe what these communities are. For this ethnography, I examined 13
105 different online communities. Appendix E provides a quick reference describing who ope rates these communities and what social media platforms they use, but here I will provide a more descriptive account of what these communities look like. Appendix F features screenshots from many of these communities so the reader has an understanding of w hat they look like. Then I will explain several aspects related to the creation of these communities: the reason for their existence, how web technology is used to create or enhance the community, and the trajectories of these communities. Throughout this dissertation I use two similar terms when referring to the online community. When speaking of the online IBD community, I am referring in general to all of these individual websites as a whole. Many of these websites are interconnected to each other, an d many of the community leaders are at least familiar with most of the others in this study; some are even good friends with each other. The term online IBD community also extends a bit beyond the websites explicitly studied. Many of them refer to and li nk to other communities that were not studied, and some of those community leaders post comments or material within the communities I did study. The term online IBD community, then, should not be understood as every IBD website; that goes beyond the scop e of this project. Other times I speak of individual online IBD communities (e.g. the Girls With Guts community). This use of community, then, refers to all of the interconnected social media platforms utilized by the leader/s of one specific community, su ch as Girls With Guts website, YouTube channel, Twitter, Facebook, and other social media platforms. Different F orms of an O nline C ommunity The 13 online communities under examination have much in common. All are operated by somebody with either ulcerati ve colitis or Crohn s disease. Many of the
106 community leaders have had such severe manifestations of the disease they have had surgery to remove part of or their entire colon. The communities have been in existence for two to four years, on average. All com munity leaders told the personal story of their illness somewhere within the social media sites they maintain, but most of them also provide general health information and support to people with inflammatory bowel disease. Some communities are more focused on living with ostomies, so these communities have appeal to people outside of the IBD community as well. In addition, some of the community leaders have been diagnosed with other chronic illnesses, so they, too, reach an audience that includes people wit hout IBD. For all their similarities, each community is different in its focus and how the leaders present their messages. iHaveUC. Adam is a young man who has had ulcerative colitis for 5 years. His community, iHaveUC, is focused primarily on people with ulcerative colitis, in contrast to the majority of these online communities, which address both forms of IBD. While Adam does share his illness story, especially through video, his website primarily features the stories of other people with IBD. He encour ages people to submit their own illness stories, posting several stories a week. At the time of this writing, more than 1,700 people or so have submitted stories to his website. These are stories from all demographic groups: young people and older, mothers , fathers, children, people newly diagnosed and people who have had the disease for years. Fernpixel s community. Fernpixel (chosen screen name) operates the oldest community among those examined (no formal community name). She has had ulcerative colitis for more than nine years and started her community more than five years ago. Her community exists primarily on YouTube, though she has a blog and a
107 Twitter account as well. Fernpixel is a proponent of the Specific Carbohydrate Diet, a special diet that som e people with IBD use to help treat their illness. Many of her videos educate people about the SCD, and some feature SCD friendly recipes. Her community was also the least active as of this writing: she has withdrawn from the online IBD community for a var iety of reasons and has posted little content in the past two years. However, all of her previous material remains visible and accessible to her audience. Ostomy Outdoors. Heidi has a permanent ostomy and has battled ulcerative colitis for 14 years. Her c ommunity is about showing that even with an ostomy, a person can still pursue his or her passions. Heidi participates in many extreme sports snowboarding, rock climbing, mountain climbing, and others and shows people how she engages in these activities whi le having an ostomy. Her primary content is a long running series of videos showing how she returned to the world of sports and the outdoors following surgery. Blood, Poop & Tears. Jackie operates two mostly separate IBD communities. Her first one, Blood, Poop & Tears is primarily a blog documenting her illness journey, a series of surgeries, and recovery. Her blog is notable for her brutal honesty about the illness experience, doctors, and thoughts about various controversies in the online IBD community. Jackie is one of the most opinionated community leaders studied for this project, and her viewers seem to appreciate that she tells it straight and does not sugarcoat the illness experience. (Her second community will be discussed momentarily.) Awestomy. Jason, who has had Crohn s disease for 16 years, is also a permanent ostomate. His community is quite different from the other communities under
108 examination. His website is the only for profit business studied and specializes in making undergarments and ot her accessories for people with ostomies. His company sells a series of high waist lingerie for women designed to cover and conceal an ostomy bag. He also sells underwear for men, wraps that help keep the bag secure, and T shirts with ostomy related humoro us sayings. Awestomy maintains an active Facebook page and often partners with other online IBD communities, especially smaller non profits, as a way of creating unity within the online IBD community. A Guy With Crohn s. Jeffrey thinks male voices are les s prevalent in the online community and wants to change that. Through his blog he explains his illness history and provides his thoughts on various controversies within the online IBD community. He is also a prolific tweeter and uses Twitter to connect to his audience members in more personal, one on one ways. Sick Girl Diary. Kelly Fricke has been sick for more than 10 years but was only diagnosed with Crohn s disease two years ago. Her community is focused, in part, on the struggle of living with undiagn osed illness and the difficulty some people have in getting straight answers from their doctors about what is wrong with them. Her community is active on a variety of platforms, including YouTube, Tumblr, Facebook, and Twitter. Her community is probably th e most overtly inspirational of the communities studied. Nearly every day she posts inspiring messages for her followers, gives them encouragement, quotes Bible verses, and otherwise tries to give people hope and strength to keep fighting their illness. F orward is a Pace. Lauren has had Crohn s disease for nine years and has a unique position in the online IBD community: she is the only community leader who also
109 works for the Crohn s and Colitis Foundation of America. Her online community originally starte d as a running blog. Lauren has participated in several races, including half marathons, over the years and often writes about her training and race days. A couple years into her running blog, she started talking about her Crohn s disease. Her community is now more explicitly focused on IBD than it was in the beginning. About the same time she started talking about her disease, she was hired by the CCFA to be the Team Challenge manager for her chapter. Team Challenge is the CCFA s half marathon fundraising event, so her job and community combines her interest in running with her experience of living with IBD. Let s Talk IBD. Maggie Baldwin is the youngest community leader in the group, age 20 at the time of this writing. She has had Crohn s disease for eigh t years and began her online community several years ago when she was still in high school. She started on YouTube, telling her story and trying to help other people live with an ostomy. She has since utilized many more social media platforms, including a blog, Twitter, and Facebook. Based on the popularity of her videos, many ostomy supply companies have asked her to review their products. Through her success online, she has started modeling for ostomy supply companies. Stolen Colon. Stephanie, like Maggi e and Kelly, started experiencing symptoms of Crohn s disease at a very young age: she s been living with the disease for 13 years (currently age 27). Her blog chronicles her illness journey. She has also had surgery and currently lives with a permanent os tomy. She is athletic and writes about running and other activities she is trying again post ostomy surgery.
110 Non P rofit C ommunities Several of the communities under examination were developed as non profit organizations. These non profits are small and ha ve only been around for a few years. The leaders of these communities are not trying to challenge larger non profits like the CCFA or UOAA directly, but rather are trying to meet needs that these organizations are not meeting. The Great Bowel Movement. An drea is a co founder of the Great Bowel Movement, a non profit with a simple goal: getting people to talk about IBD. The GBM accomplishes this through fashionable T shirts that direct others to Ask me about my Crohn s disease/ulcerative colitis/J pouch/os tomy. Their online community encourages members to get T shirts to raise awareness in the physical sphere. While the GBM does feature some health information, and Andrea and co founder Megan do share their illness experiences, their goal is to get other p eople talking about their disease. Girls With Guts. Jackie s second community began as a collaboration between other female IBD community leaders. GWG is focused on supporting all women with IBD. This non profit also has several programs with which people can get involved. They have an annual retreat focused on getting women together in one location to build personal connections with others. They have their own version of face to face support groups called Butt Buddies. They also have a program called Butt Baskets where they send gifts to people who are in the hospital for bowel surgery. Finally, they facilitate an ostomy supply drive, collecting unused supplies from people who no longer need them. The supplies are then redistributed through another non pro fit to people in the United States who cannot afford ostomy supplies.
111 Hospital Patient and Crohn s Disease Warrior Patrol. Michael has a multifaceted community, telling his own illness experience through a blog, YouTube, and Twitter, but also operating hi s own non profit, the Crohn s Disease Warrior Patrol. Michael, age 50, was the oldest community leader among this group and has been living with sickness for the longest, more than 30 years. He has had more than 20 surgeries and more than 200 hospitalizati ons. He is a tireless advocate for people with chronic illness and is very active online when his health permits. His non profit, CDWP, is focused on matching veterans of the disease with newly diagnosed people so that they can develop a mentor mentee rela tionship. Division of R oles Most of these communities are operated largely by individuals. Adam, Fernpixel, Jeffrey, Kelly, Lauren, Maggie, Michael, and Stephanie maintain their own websites and create their own content, although community members submit content as well in the form of comments and occasionally other material. Aside from Adam and Michael, who are on disability because of their illness, the others either work or attend college. But a few community leaders have the support of others. While I did not interview these other partners, they should be mentioned so the reader does not have impression that all of these communities are operated by individuals. Andrea is one of two co founders of the Great Bowel Movement. While Andrea focuses on the logistics of running the non profit and the maintenance of the website, Megan focuses on product design and the day to day work needed to bring ideas and projects to fruition. They are also joined by four others who help them with outreach, writing blog en tries, and providing accurate medical information. Heidi is the face of Ostomy Outdoors, but her husband, Doug, is just as much a partner in maintaining the
112 community. Doug shoots and edits all the videos, handling the more technical aspects of the website . Doug occasionally blogs, offering his perspective as a partner to Heidi through her illness experience. Jackie is the president and founder of Girls With Guts but is also supported by a team of women. Four others help develop the non profit, create conte nt, and manage the books. Jason created Awestomy with the help of his partner and fianc, Jessica. Jason handles the technical needs of the website whereas Jessica assists in content creation, graphic design, managing the business, fulfilling orders, and i s also the point person who talks to the lingerie designer about their product ideas. Reason for E xistence While all of the community leaders created their communities to document their illness, help other people, and raise awareness, their reasons are mu ch more nuanced than that. Understanding why community leaders started their websites leads to a better understanding of how these communities function. Knowing their intentions, it is easy to see why community leaders post certain things, communicate with their audiences in certain ways, or engage with some new media technologies and not others. No community leader had only a single reason for starting her or his community: each of them had three or four reasons, often interrelated. The longer communities have been in operation, the more the purpose of the communities matures. While many people began their communities for personal reasons, once they started getting a response from people, the reasons for sustaining their communities became more outward. Th e leaders sustain their communities just as much, if not more, for the sake of their audience than for their own sake.
113 Connecting with others Many leaders stated that one of their primary reasons for starting their community was to find other people with the disease. Many of them acknowledged that they did not know many people with the disease when they were diagnosed, so they started telling their story in the hope of finding others with the disease. Maggie said: 1 I remember seeing all these commercials f or ostomy supplies , and they always had like elderly people advertising it . (laughs) So I thought that I was the only 16 year old girl with one. I thought, I can t be the only one in the world, so I m gonna see who else is out there. So I just threw up a video on there just to see what would happen, if anyone would see it. It was crazy, the amount of people messaging me saying, Oh my gosh! I have the same thing too! I didn t know! I thought I was the only one! While many community leaders were looking for people in general who had the disease, some were looking for a very specific type of person. Lauren, who enjoys marathon running, wanted to meet other people with IBD who were also athletes. Looking for such a specific demographic group is difficult in face to face settings, but in the online environment, it is much more feasible. She said: And then in 2011 whe n I started, or when I was half Iron Man training and started to have those setbacks, I started looking online for runners, athletes who ha d Croh n s or colitis who could understand those kinds of things. And I didn t find much. & I thought, Well, there has to be other people like me out there. Maybe no one is saying anything. So I started to say things, and I found a triathlon coach who lives in Seattle who has ulcerative colitis is a professional triathlete and has, you know, had to start and stop her training because of hospital stays and flare ups. A s I started writing about it, then it was like people starting coming out of the woodwork. 1 Unless otherwi se noted, quotations from community leaders come for personal interviews. If a quotation comes from a blog, Facebook post, or other textual source, an explanation of the source precedes the quotation.
114 Docum enting illness Online technology like blogs and vlogs allow for a person to easily chronicle his or her day to day experiences with illness. Posts can be short, and because they are organized in reverse chronological order, it is easy for either the autho r or the audience to go back and read a story from beginning to end. When many people started their communities, their only aspiration was to document their illness. Communities were often started shortly before or after a person had surgery, usually to re move their colon. Because surgery is often conducted in two or three stages over the course of four to six months, the surgery experience can impact a person s life for a significant amount of time. And because surgery is filled with uncertainty, blogging about what one is going through and any complications or setbacks that occur seems to offer not only a way of staying occupied during a lengthy recovery, but a good opportunity for a writer to reflect on the life altering changes that are happening to thei r bodies. Jackie said: I started blogging in March of 2010 when I realized I was going to have surgery, because in the beginning I hid it from everybody. I was humiliated , and no one I knew had it , and nobody in my family had it, and I made everybody I kno w lie. & Then when I realized I was going to have more surgery that s when I kind of came out of the closet and started my blo g, the Blood, Poop & Tears blog. Other people use the blog to give family and friends an update on what they are going through. W hen a person has a severe chronic illness, their health status can change drastically from week to week. If they have strong support structures, those people naturally want to know how their child, cousin, nephew, niece, grandchild, or friend is doing. Bec ause surgery and hospitalizations can take a lot of energy out of a person, sometimes bloggers find it easier to update their loved ones online. Stephanie wrote on her blog:
115 There are a number of reasons that I started this site. One was to be able to keep people updated. I ve seen such an outpouring of support over the past weeks and I wanted to be able to let everyone know how I m doing and this is the most efficient way to do that . Helping others While many community leaders start telling their story fo r personal reasons, many of them also want to help others with the disease. Altruistic reasons for creating an online community emerge soon after the community is created. While Kelly started telling her story to find others, she found very early that her strength was in giving inspiration to others. She said: I was in my room , and I was like, You know what? Today was a really rough day , and I m just gonna make a video and put it on YouTube and just see if anyone, you know, is in the same situation as me , m aybe can give me advice or help. And then after I did that first video, I saw that a lot of people were in the same situation . I was like, Well, maybe instead of me asking for help, maybe I can be someone to kind of help others and give light to the sit uation . Michael started his non profit, Crohn s Disease Warrior Patrol, because of a perceived failure of medical professionals to provide adequate support for people with chronic illness. He had heard many people tell horror stories online about their i llness experience, people whose doctors did not have the time to explain what their disease was or the ability to provide compassion. He realized that medical professionals have institutional barriers to providing one kind of support that patients seek: I formed this organization with the intent of matching patients all over the world & Listen, I don t blame healthcare professionals. I think health insurance has really caused doctors and nurses and PAs and nurse practitioners to spend less time with patient s, you know. So I thought that, if a patient would help another patient that could really it s very simplistic but it could really go a far way.
116 Raising awareness As I will discuss in Chapter 6, many people in the online community feel that IBD is stigmat ized in particular ways. The online IBD community works to challenge various stigmas and raise awareness about the disease. Heidi said: W hen I was recovering from surgery I was kind of thinking about & how much better I felt and realizing that I wasn t tal king about my disea se because it was stigmatized. B ut being quiet about it wasn t helping to get rid of that stigma, so I decided I should start sharing my story to amend that because I m not helping the situation any. For some community leaders, challeng ing stigma and raising awareness means helping people overcome their inability to talk about the disease. That is why The Great Bowel Movement s mission is to get people talking. Andrea said: W e have the most simple mission, and you can lose sight of it so quick because it is so sim ple that we constantly are reminding ourselves of it. Reminding other people of it. Like, No, no, no, no, no! We re not here to do research. We re not here to raise money. We re not here to do walks. We re not finding cures. We are literally getting you to talk about it. And then you can go do all those wonderful things. Literally, just talk about it. Adam had a similar goal when he created his website, though he accomplishes it in a different way. Instead of getting people to talk about their disease face to face, he wants people to share their story online. He said: I was like, Jeez, maybe if I make a website talking about my situation I ll meet someone, someone will find it, and all I want to know is, Will this get better? That s the obvious question. That s when I started sharing my story. & After a couple of months I thought, You know what? Maybe I can see if other people want to share their story on this website, so I asked people that wrote, saying in a comment, If you d like to share your story, fill it in there and I ll post it on the website. Use of T echnology Community leaders have myriad reasons for telling their story online and building their communities. How exactly, though, do people build their online com munities? On
117 the surface, the answer appears intuitive: they use websites and social media platforms like Facebook. Websites are necessary for an online community, but that seems axiomatic given the topic of this study. In this section I will discuss how c ommunity leaders use specific new media technologies to construct their communities and communicate with the audiences. When I use the term new media technology, I am referring primarily to the software needed to facilitate an online community. While al l websites are built with a common technology computer languages such as HTML, CSS, and PHP the arrangement of code is unique to each platform. To me, the social network platform Facebook is a different technology than Twitter, even though they do very sim ilar things and are built with a similar language. The user experience is different on Facebook than Twitter, and the user experiences on both are different than that on YouTube or Pinterest. Within a particular platform, multiple technologies are often at work. Twitter, for instance, allows people to send and receive text or image tweets; allows users to retweet the tweets of somebody else, and allows people to follow other Twitter users and be followed by other Twitter users. All of these actions that a u ser can take while on Twitter constitute sub technologies of the greater technology of Twitter. New media technology also includes a hardware component. The World Wide Web and its associated technologies exist as code, but that code, that data, is stored on physical computers and servers, and those servers are connected via conduits and wires, which are in turn linked to individual machines operated by users: desktop computers, laptops, tablets, and mobile phones. For this project, I was not concerned
118 with the hardware side of new media technology, other than that I acknowledge its necessity in making the software technologies work. Each online IBD community is built using a web of social media platforms. While not every community utilizes every platform, some platforms are used quite frequently by the community. The common platforms are blogs, Facebook, Twitter, YouTube, and email. Blogs Blogs are utilized by every community leader in some way. For some, like Jeffrey, Lauren, and Stephanie, blogging seems to be their main type of content. For others, blogs are just a smaller portion of the overall website, as is the case with Awestomy, the Great Bowel Movement, Girls With Guts, and Let s Talk IBD. Blogs primarily feature the illness story of community lead ers. Jackie and Stephanie used their blogs to explain the day to day process of going through surgery and then recovering. Other people, like Lauren and Jeffrey, have not had as severe a case of IBD, so they often write more topically about medicine, treat ments, procedures, or other illness experiences they have had. Sometimes community leaders will post about topics of interest to their audience. Several community leaders have written posts about sex over the years, for example, often at the request of th eir audience, usually addressing the question and fear: how does a person approach sexual situations when s/he has a chronic illness? Other times community leaders will let somebody else post on their topic, usually referred to as guest posts. Some blogs g et almost no comments, yet other blogs, like Adam s iHaveUC blog, often get 20 40 comments on every post.
119 Facebook Everybody except Fernpixel had a Facebook page. Facebook is used for several things. First, most community leaders will post links to unique content that they have created elsewhere. For example, when they write a new blog entry, they will post the link on Facebook. Posting a link to Facebook is one way to get increased exposure for that content. Second, people will post links to other content , such as content created within other online IBD communities, news stories about Crohn s disease or ulcerative colitis, or reports about new medical treatments or procedures. Third, community leaders will post photos of their fans, of themselves, or still images with humorous or inspirational sayings. Fourth, community leaders will sometimes ask questions of their audience; these questions usually are not about health problems the community leader is having, but rather general questions about treatments, p rocedures, health experiences, etc. These questions are designed to get the audience to converse with each other. Finally, community leaders will sometimes use Facebook to give updates on their community or to tease future projects. Audience members also can post anything they want on a Facebook page as long as they have liked it and have a Facebook account. However, almost universally across the communities, audience generated content is uncommon compared to leader content: Leaders post far more content , and get a far better response, than audience members do. This might be partially explained by audience members coming to these communities more to consume health information and support than to provide it. Another reason audience content is so overshadow ed is that Facebook pages, as a technology, privilege the voices of community leaders over audience members. Facebook pages were originally created as a way to promote celebrities and
120 businesses, not to facilitate support groups. If I like a page for Mou ntain Dew, for instance, it is probably because I want to get updates about Mountain Dew, not because I want to hear what other people have to say about Mountain Dew. Facebook does have a more democratic forum where posts by one specific group of administ rators are not privileged over other people in the group: Facebook groups. At least within the online IBD community, most everybody seems to be using Facebook pages to reach their audience, not Facebook groups. Thus, it is worth explaining how Facebook pri vileges the postings of leaders. When a person first visits a Facebook page, the default view will be Highlights. Highlights show the most recent, and most popular, posts by the page itself. In one small box it shows Recent Posts by Others, which will list the first line of about five posts by audience members. Posts by community leaders are typically shown in full. Highlights can be changed to either Posts by Page or Posts by Others. Those filters show, then, either all the posts by the page or a ll the posts by others. No matter what the setting is changed to, however, it always reverts to Highlights when a user leaves the Facebook page and revisits it. Because Facebook pages always default to privilege the voice of the community leaders, audien ce member postings do not gain as much exposure as they probably should for community members to feel more invested in the community. Many community leaders recognize that Facebook is not always fair to the voices of their audiences. Oftentimes, community leaders will repost an audience member s question. That way, the question gets more exposure when it comes from the community leader. Many community leaders do this, and the community leader s repost always has many more comments than the original post. B y posing the question to the
121 community, leaders crowdsource the answer; that is, they seek an answer from a large crowd under the assumption that somebody will know how to answer it. Stephanie said: I met one girl who was having an issue with her stoma p rolapsing and was asking if I knew of any way to kind of help with that, and it was just honestly something I d never dealt with. In those kinds of scenarios that s where things like Facebook really do come in handy, because I ll usually ask, Do you mind if I post this on there? S ometimes if you post a question on Facebook you can find other people out there who may have dealt with that situation and can give some advice that way. Twitter Every community leader uses Twitter, some more than others. Someti mes community leaders use Twitter in spurts: tweeting frequently for a few months, decreasing their activity for a time, and then tweeting more frequently again. Others, like Lauren, Jeffrey, Adam, and Michael, use Twitter throughout most days. Because twe ets are limited to 140 characters or a single image, not much can be said. Twitter is used, then, to 1) give short updates about the community leader s health, 2) share links to new content on a blog or YouTube, 3) promote contests or programs, 4) share li nks to other IBD websites, news articles, or medical studies, 5) ask questions of the audience, 6) respond to questions from the audience, and in the case of those communities with products, 7) promote new or discounted products. Occasionally community lea ders use Twitter for personal reasons as well, such as to comment on current events, celebrities, or pop culture. YouTube Nine of the community leaders utilize YouTube, but not all with equal success. Kelly, Fernpixel, Adam, Heidi, Maggie, and Michael use YouTube the most. Some community leaders post recipe videos (Fernpixel and Adam, who are most convinced
122 that special diets help their disease). Many provide videos with medical information. And some give updates on their health, particularly if they are f acing something serious, like a colonoscopy or surgery, or if they are recovering from a surgery or hospital stay. Videos, though, are time consuming to make, and some community leaders who started on YouTube, like Maggie, Fernpixel, and Heidi, realized early on that YouTube as a platform does not offer the best support for a community. People can comment on YouTube videos, and each YouTube channel has a general discussion page, but a community leader often needs to communicate with his or her audience in other ways. Any text based platform allows for community leaders to give quick updates about new things happening in the community. Sometimes, certain topics lend themselves better to the written word. People with active YouTube communities usually try to provide this sort of information in the description box of each YouTube video. However, YouTube, by default, shows a condensed description of the video: text is deemphasized, video is emphasized. So much like Facebook privileges certain kinds of content, so does YouTube. Community leaders who use YouTube often include links in the description to their other platforms, and often they will tell their viewers, either verbally in the video or in text form, to click on the description to find links to more info rmation. Email Email is not commonly thought of as a social media platform, but email is an online communication tool at the disposal of people in the online IBD community. Every community leader prominently displays her or his email address (and some co mmunities use several email addresses), and audience members take advantage of this communication method. The difference between email and all other platforms reviewed is clearly the private nature of email. Whereas all these other platforms
1 23 encourage publ ic communication, email is private, and sometimes audience members are more willing to discuss personal issues through that medium rather than a public medium. It should also be noted that most social media platforms like Facebook, Twitter, and YouTube als o provide audiences the option to send a private or direct message to the administrator of the page. While the specific service used might differ (sending a private message through Facebook as opposed to Gmail), the end result is largely the same: private, one on one communication. Many community leaders said that their audience members talk to them in more detail about their illness history through email than through public forums. Heidi said: I think they do email more personal stuff. Every once and awh ile I get a comment that s really open, but I would say as a rule the private emails are a lot more personal. They share more specific details. Maggie suspected that people email community leaders more personal details because they are afraid that their f riends and family might see their public comment, which is certainly a drawback of certain social media spaces: In emails and messages they go into a lot more detail of the nitty gritty stuff , like if they have accidents or things like that . A lot of peopl e don t wanna , like , put that kind of comment on a video because a lot of the people who have YouTube channels or YouTube accounts, they re not just on there for Crohn s. They re on there for other stuff. They might have other friends who have no idea what s going on in their lives, so they don t necessarily like to comment. Many audience members wrote 2 that they had emailed community leaders in the past. Sometimes, it was just to praise a community leader for the work they were doing: I have emailed the blogger Ostomy outdoors to compliment her on he r writing and 2 When I say that audience members wrote or an audie nce member wrote, I am referring to the written responses they provided to my online survey. If an audience member s quotation comes from a blog comment, Facebook comment, or other online posting, I introduce the quotation as such.
124 inspiration to me (female, ulcerative colitis, age 41). Many audience members also wrote that they emailed community leaders to ask them about medical issues. Other social media platforms Blog s, Facebook, Twitter, and YouTube were the main social media platforms utilized by the communities in this study. Whether these platforms will always be popular is impossible to say: likely new platforms will rise in time and some of these platforms will f all in popularly. Community leaders have experimented with other platforms, but these platforms were mostly underutilized. These platforms included Pinterest (4), Google+ (3), Instagram (2), Tumblr (2), Vimeo (2), Flickr (1), Spring.me (1), and YouInspire (1). Because these platforms were not widely used, it is difficult to say what effect they have on the online IBD community. Trajectories of the O nline C ommunities It is hard to predict how long individual online communities will last. The communities ex plored in this ethnography have been around for 2 4 years: will they be here 10 years from now? Community leaders were unanimous that they wanted to continue their online communities as long as they could. Adam said: If I have time and it s still fun and i nteresting and exciting, then yeah, I can see myself doing it. But if it s not fun and interesting and exciting, if I don t feel like people are really enjo ying it. If people are still enjoying it, and I wasn t enjoying it, then I would maybe find someone else to take it over. Several people said that they would like to turn their advocacy work into full time careers, whether or not that revolved around the existing community. Kelly said: I really would love to like have a career with all this stuff. Like I would love to be doing public speaking, or, you know, talking to other people at conferences and things like that, just trying to help other people. That s really what I would love to do, but, you know, it s all in God s hands.
125 Some of these communitie s have a financial aspect to them, either as a business or non profit, and finances are a major determinant of how long these communities can sustain themselves. Jason from Awestomy said that he would love to turn the business into a full time job; he curr ently runs three different businesses. He admits, though, that this is unlikely because of the product he sells: I just think that unfortunately it s a very small niche business where there s only a set amount of people that have an ostomy or would need th ese kinds of products, so I don t think it would be something that we can do on a full time basis unless we got an investor or something like that. Jackie explained that even though she loves Girls With Guts, she does not anticipate ever turning it into a full time job. For one, she likes being president of the organization, yet said that board members of a non profit cannot be paid. Second, doing Girls With Guts full time would necessitate having health insurance and a 401K, and she could not justify taki ng that much in donations when that money could better be spent on the people who need it. Instead, she longed for the financial means to hire employees to continue the work of Girls With Guts: So right now, and probably for the foreseeable future, I woul d rather hire somebody else to work for Girls With Guts. As a selfish decision, a strategic decision, and also as a business decision. Challenges in Maintaining Online Communities While community leaders are committed to maintaining their presence online , and while they all have good intentions to help other people with IBD, many challenges exist in sustaining and maintaining these online communities. In this section I will examine two perspectives on the maintenance of these communities: challenges that the community leaders face in sustaining their communities, and challenges that community members face in participating.
126 Community L eader C hallenges While not every community leader identified the same set of obstacles, many of them agreed on similar obst acles. Community leaders face three threats to the development of their online communities: lack of time, personal health struggles, and staying up to date. Lack of t ime The biggest obstacle community leaders face is not having enough hours in the day. Mo st of these leaders either have full time jobs or are attending college, and they all have a chronic illness, meaning that maintenance of these online communities comes on top of already busy lives. The number of hours community leaders spend with their co mmunities is staggering. Andrea estimated she spends 20 hours a week on the Great Bowel Movement: processing orders, answering emails, and balancing the books. Fernpixel estimated she spent 2 4 hours a day on her community during the height of her involvem ent, noting that a 5 minute video could take 10 hours to edit, depending on the subject matter. Heidi spends 2 3 hours a night on average. Jackie spends 20 30 hours a week on Girls With Guts. Adam, who was unemployed at the time of the interview due to his illness, spends 40 50 hours a week on iHaveUC. Maggie from Let s Talk IBD also said that she tried to take advantage of extra blocks of free time, however long that can last, in an attempt to build up content: I just feel like there s never time to get e verything going. I don t know if you look at my videos, but there s always like a two month lag. I ll do videos, you know, I ll do a whole bunch of videos in a two week period, then you won t see me for a few weeks (laughs). I feel like there s so many thi ngs going on, so I try to get on there as much as I can, and I feel bad.
127 Personal health struggles All of the community leaders live with IBD, and many of them have other chronic illnesses as well. While many of them were feeling well when I interviewed t hem, many of them also have had a very unpredictable history with their disease. The disease can flare up and strike when a person least expects it, which can make updating the community challenging. Kelly, who had more health struggles than most of the co mmunity leaders, talked about how maintenance of her community sometimes came at the expense of her own health: I t does get challenging at times, especially when we don t have very much en ergy as it is, and sometimes I just wear myself out helping everyone else . I m making myself sick because I m trying so much to help othe r people that I don t focus on helping myself . T hat just brings challenges because then if I get really sick, then I can t help people as much, and you know, write as much because I m not as focused. Several of the community leaders mentioned that their health has a major effect on the amount of free time they have. Often a bad health day can seriously derail their plans for their community. Michael said: Sometimes I can t get out of bed, so that s a lost day. I could work for many hours straight. & When I m feeling well, you know, if I m having a good day, I try to get as much done as p ossible. And I will work maybe 14 hours. I mean, I ll take a break , of course. Because there are many da ys I can t work at all. When I m healthy I try to take advantage of it. And I can t predict it either. Oftentimes a community leader will explicitly tell his or her community that health problems have prevented him or her from being more active. Michael o nce posted on Facebook: I had to postpone producing this week s CDWP Answer Video Diagnosing Crohn's Disease because i am having Lung Surgery on Monday to help diagnose a chronic Lung Condition I most likely contracted from a Crohn s drug and I m simply not up to it and must rest before the surgery
128 S taying up to date The first two challenges, lack of time and personal health struggles, are intimately related to a third challenge: keeping the website up to date. Evidence of community leaders fall ing behind their own schedules for posting new content is widespread. At some point, most community leaders have made an update post on their blog, Facebook, Twitter, or YouTube: sometimes in all places at once. The community leader typically starts the update post by apologizing for not being more active and then rededicating him or herself to making up for it. For example, Stephanie once wrote: I hate that I ve been neglecting The Stolen Colon lately. I am over a week behind on my Team Challenge Tuesda y updates. While I really don t like feeling so disconnected from this little world of mine, I have been focusing right now on my day to day world. I am slowly getting myself more organized and put back together. I m not there quite yet, but I m making my way back. [This post was made 3 days after a previous update post, which was made 10 days after the post before it.] Some community leaders take a different approach. Instead of disappearing for a period of time with no explanation, and then apologizing l ater, some are more proactive, warning their community in advance that they will be missing. Maggie, for instance, has frequently taken breaks due to school taking priority. She once wrote on Facebook: I thought I d just mention I need to take a little You Tube/fb/everything break... but only until the end of May! I have been having a lot of trouble balancing school work and youtube and my store while trying to have fun, too. Please stay healthy and I ll talk to you at the end of May! Now off to write 2 pape rs and do 9 pages of chemistry homework... see? When community leaders fall behind in creating content or answering emails, many feel guilty about neglecting their community. This guilt can be a barrier for leaders in maintaining their communities. When p roviding updates about their lack of involvement, many leaders apologize and vow to be more active. I, too, have
129 experienced this guilt: if my participation online dropped for a couple weeks I would feel guilty about not updating. Sometimes that guilt can be so overwhelming that I would put off updating the website for another day, and then another day, and then another day. A cycle of inactivity then starts. And while the solution to this guilt might sound simple just update the website! updating the websi te happens out of obligation, much like a chore. And once voluntary, service oriented work which is supposed to be fun and generally gives community leaders much satisfaction becomes mandatory due to self imposed goals, there is less incentive to do the wo rk. Before I started this project, I was aware of these gaps in content in the online community. Was it simply because people were busy, or did they ever run out of things to say? I know in my case, after operating UCVlog for five years, my partner and I really had nothing new to talk about anymore. While our health still challenged us, the struggles we face were more of the same. We had pretty much covered everything we could. I asked community leaders, then, if lack of content was ever an obstacle to pos ting, but to my surprise, most people had plenty of ideas, just not enough time to implement them all. Heidi from Ostomy Outdoors explained: I thought I would when I first started my blog, Gosh, am I going to have enough stuff to write about? But I have so many ideas , and for me the thing is just a lack of time. It s not ideas. I can think of so many things I want to write about. I need to remember to keep a list, because I tend to forget them. Community M ember C hallenges A functioning community needs pe ople who talk to each other and get along, but no community is going to get along 100% of the time. Conflicts arise, sometimes between or among audience members and sometimes between audience members and community leaders. Other times, community members ca n become disconnected from
130 each other, not because of any explicit conflict, but because community members might be in different stages in their illness journey and have a fundamental difference in how they view illness. In this section, I will explore thr ee types of conflict that have the potential to weaken a community: community member to member conflict, conflict directed toward community leaders, and structural disconnections between community members. Member to member conflict Not every community mem ber has a problem with other people in the community. Based on the survey of audience members, many people have had no negative experiences in the online IBD community. Others, though, did have a problem with how certain community members acted: S ome peopl e indulge in a lot of poor me attitudes. Everyon e grieves differently, so I won t tell these people how to feel. However, I try my best to stay positive, no matter what, so I wish there were certain groups that were deemed more positive than others. (m ale, ulcerative colitis, age 36) I don t like it when people one up each other. You had 2 surgeries? Well, I've had 15...it should always be a nurturing community. (female, Crohn s disease, age 41) Many community members have also witnessed negativity com ing into their community from the outside. This kind of behavior is sometimes called trolling and is common in many online communities unrelated to health. A troll is somebody who bullies, mocks, or harasses other people in an online community, not neces sarily because s/he disagrees with somebody, but mostly for his or her own entertainment. Several community members wrote that this sort of conflict is a threat to the community: Sometimes trolls are able to actively use these community websites and make fun of or bully others for what they are going through with their disease. This has probably been the only thing that s ever made me contemplate quitting IBD related social media. It s seems that moderators
131 are not very quick to stop this type of abuse. (female, Crohn s disease, age 20) Occasionally people do leave a community, but few people reported having done so. I have stopped following a few folk on twitter because all they do is whine, sometime s you need to do that but I don t want to read it ab out it every time I see their tweet come up (female, ulcerative colitis, age 41). Some audience members speculated that negativity in these groups can lead to a lack of support between community members. One person wrote that IBD puts people on a rollerc oaster because there are many positive and negative aspects of living with the disease. While he acknowledged that it is okay for people to vent once in a while about their frustrations of living with the disease, too much venting can be bad for the commu nity: I t is easy to find folks in the various online communities that are consistently negative, aren t willing or able to advocate for themselves in relation to the care they receive and those that are downright bitter about their situation and can negati vely impact those that are truly looking for positive feedback to deal with their personal situation. (male, indeterminate IBD, age 32) Community leaders occasionally have to step in to sort out conflict between members. Jackie said Girls With Guts has a largely positive community, but on rare occasions they have conflict between members. She told one story about a woman with an ostomy who was asking about one night stands and how others have brought up their ostomy to potential partners. Some in the commu nity gave her pertinent advice, yet others criticized her for engaging in immoral activity and said she should not even be asking about one night stands. Jackie said GWG s policy is usually to leave comments public, even if people disagree, but in this c ase they deleted some of the negative comments:
132 T here were some personal attacks on people in the posting that got way beyond what our community is all about, in terms of like, it wasn t even about IBD anymore. It wasn t about IBD anymore. It wasn t about one night stands. It was about, like, You re an idiot because you said this stuff and I was like, Ehh, that s not who we are. Andrea said that sometimes people fight on the Great Bowel Movement s sites about different treatment options, about which peo ple can hold very strong opinions. While the GBM tries to stay out of these conflicts, occasionally they do engage people: P eople get very passionate about their form of treatment or how they talk about it or don t talk about it. You know, some people over compensate and come on so strong and defensive, and nobody s ever even said anything to them. And I know, I think Megan and I both light up because we re like, Ooh, that s a teachable moment. Okay, let s help that. You know, like, relax! Conflict directe d toward community leaders Sometimes community leaders and their audience members come into conflict. This is not surprising, as people can have disagreements over treatments, medical advice, attitudes toward living with the disease, or any number of othe r issues. Most community leaders commented, though, that negative, insensitive, or even inappropriate comments happen rarely, maybe 1% of the time. When community leaders do face negativity, they are quick to shut it down, which might explain in part why t hese leaders face so little of it: they rarely engage people to perpetuate the conflict. Jason from Awestomy explained that he has had to ban a few people from the social networks: It was just more of the negative reaction to individuals with their pouche s out or something like that and was just kind of someone trying to be a troll saying, you know, My output comes out the right end and all those kind of stuff. T hey even put a vulgar picture of somebody s bare butt of somebody on there. And that s just c ruel. And no matter how I tried to explain, you know, it didn t matter.
133 Occasionally an audience member will question a community leader s credibility with regard to the way they tell their illness story. Kelly said: E specially all the undiagnosed stuff, a lot of people were like, Oh, you re just pretending to be sick, and it s like, Umm, no. Why would I pretend about being in the hospital every month? You know ? So that was definitely something that was hard to receive, but it doesn t even matter anymo re. Maggie said that sometimes she does not see a negative comment right away, and before she can respond to it, somebody else in the community has already addressed it: Usually I don t see them for a little bit and all the other people who see the commen t and they start yelling back at them saying, You shouldn t write that on this video! (laughs) So it seems like that s taken care of by people who watch! (laughs) Something that Nadia and I experienced often over the years with UCVlog was creepy or stal ker like people, always directed toward Nadia. Men would ask her to marry them; they would send her repeated private messages and in general come on very strong. I never received similar treatment from my audience, so I asked some of the female community l eaders if they had similar experiences with creepy people who say or ask inappropriate things. Many of them confirmed that this did happen from time to time, but usually they ignored it. Fernpixel reported having the most of this kind of conflict: I mean, some people, you know , most harmless ones are like, Oh, I have a crush on you, cute things like that, but then I get people who are making weird suggestions like, You know, you can get more hits on your website if you do a video in a bikini, and I m li ke, Really! I ve got people that wanted to marry me. I ve had people that wanted to know too much about me, like, where I live and what I do . The community leader who seems to have received the most criticism was Michael from Hospital Patient. He was pl anning a documentary about people with
134 Crohn s disease and ulcerative colitis and was telling people in some communities about his idea, looking for people to support him. But some people misinterpreted him as showing more concern for people with Crohn s d isease over ulcerative colitis. He said some of the conflict stemmed from the name of his charity, Crohn s Disease Warrior Patrol. Even though the charity helps people with both forms of IBD, he said he named it Crohn s disease Warrior Patrol because he personally has Crohn s disease: They felt that, Oh, are you doing just Crohn s and not ulcerative colitis? Oh, you re doing both? Why are you calling it Crohn s? I was like, Look, I mean, first of all, I can t believe that you re challenging me. I d edic ate my life to doing this. In my mind, I m thinking, I help so many people. I can t believe they re hassling me over this. & I t got to a point in this particular Facebook group where I was almost in tears because people were ganging up on me. W hile it w as going on, I would get emails from other people supporting me, saying, Michael, I can t believe, but they wouldn t in public do it because I guess there was a clique of people who don t like me. Eventually Michael left that group as he concluded he co uld not win against the prevailing opinion. Community disconnect While there are many ways that communities can develop conflicts among themselves, sometimes a more subtle conflict happens when community members have different expectations about what they are looking for in a particular group, or with whom they are looking to interact. Some people reported that certain communities were not as active as they would like, or that their questions went unanswered. For instance, one audience member wrote: I feel that sometimes people get lost in the larger online communities and individual relationships do not get formed. For example, you post a question in the morning and by the afternoon there are 10 other posts so people dont see your question and it doesnt ge t answered. Also there is a lack of community because there is not a way to chat or converse easily through the group. (female, Crohn s disease, age 21)
135 As mentioned in the previous section about the creation of online communities, some community leader s will take questions from their audience and repost them, thereby giving them more exposure. But they do not do this in every case, or even a majority of cases. One community member once remarked on Stephanie s Facebook page: I wish this group was more ac tive. I mean & .Come on fellow poopers. I need some support. Let s trade advice and humor. Let s walk through this together. Hold my hand. Just make sure you washed your hands, first. I m open to friend requests. I will bare my constipated soul to others wit h IBD. Stephanie responded that the person could certainly start a conversation and asked her what she wanted to discuss. The person replied that people could start by introducing themselves (a common practice in many online groups). The person then expla ined who she was and gave a brief summary of her disease diagnosis. Nobody else responded. One person observed that many of the online communities, especially on Facebook, are very similar to each other. This is something I also observed in this research : many people tell their stories in isolation, creating their own communities, when they actually have very similar goals. The person wrote: A lot of the groups seem to be duplicates of each other. Facebook keeps asking me to join such and such IBD group which is usually a group for people with IBD to ask questions and find support , except that there are already more groups like this than I can count and a lot of the times it s the same people in all of them....so they a re dividing the community and it s not positive or productive. (female, ulcerative colitis, age 29) Many people contended that the online IBD community is dominated by people who are very sick. People who are very sick tend to go online the most; thus, a person who is less sick might hav e a skewed perception of the disease if s/he spends too much time in these communities. One audience member explained:
136 When reading the various forums you have to keep in mind that most people asking questions are having a problem. Very few write in to say how well they are feeling. The initial impression can therefore be a bit daunting, especially for newcomers. (male, Crohn s disease, age 57) In a comment on a blog post in which she shared online resources that she liked, Heidi offered very similar reaso ning, reasoning community leaders often use: One note too about online groups. They can be wonderful sources of information, and I love the support I have found on such sites. However, many people write on them when they are having issues (I have!) so some times reading through the posts of all the things people are going through can seem a little scary. It can appear like every person who has been through surgery is having problems with their appliance leaking, their skin, food troubles etc. Keep in mind th at these are often the things that we post when we are new to our ostomies and trying to figure things out. Once people are past that learning curve and are out happily living life, they often stop posting. That can often make things feel a little unbalanc ed towards the negative on message boards. Lauren said that when she first started telling her story, she, too, felt like an outsider because her disease was not as bad as some of the people in the online community had it: At first, I felt kind of guilt y about that. Like I would write my little blog, and I would read about other people who were so, so sick , and I sort of felt guilty. Like I ve never had surgery , and I ve never had a long hospital stay. And I would sort of feel guilty about that, which is total ly crazy, but I would, because maybe my story isn t as worthwhile to share because I haven t had it so bad. Finally, some audience members felt out of place because their disease status was different than others in the online community: I understand that Crohns is a more serious disease than ulcerative colitis, but sometimes because of this I wish UC had more of its own blogs/websites because most sites focus on Crohns and UC is less of a focus. (female, ulcerative colitis, age 38) I still feel quite alone. I never see another person posting who has been sick their entire life like I have. I read most posts of people saying that they were diagnosed five to eight years ago and how they were so young, but they really weren t, they remember a before an d after , and never had to
137 try to make friends while sick in the hospital, and know what a normal body feels like. (female, Crohn s disease, age 21) Summary Research Question 1 asked how online IBD communities are created using new media technologies. Th is chapter examined the common social media platforms used to create online communities blogs, Facebook, Twitter, YouTube, and email and how these platforms shape each community. While there were commonalities between communities, each community used techn ology in different ways to better meet their needs and achieve their goals. Community leaders motivations for creating their communities were also explored: connecting with others, documenting illness, helping others, and raising awareness. Research Que stion 2 was concerned with the challenges to community maintenance. Community leaders commonly cited lack of time, personal health struggles, and staying up to date as their main challenges. The maintenance of online communities was also challenged from th e perspective of community members, who sometimes got into conflict with each other or with community leaders. Other times community members had differing expectations about what the online community should be about or who it should be for, and these unrea lized expectations led to a fundamental disconnect with the community, not because of overt conflict between members, but because some people felt like they did not fit in.
138 CHAPTER 5 RESULTS : RELATIONS BETWEEN ON LINE COMMUNITIES AND EXISTING SUPPORT STRUC TURES Online IBD communities do not exist in isolation. Individual communities are often interconnected to each other; many of the communities studied share links to each other, some more than others. But online IBD communities also exist in relation to e stablished support structures. While some of the communities in this study were non profits, all have been established within the past three four years. However, existing non profit support structures, most notably the CCFA and UOAA, have been around for m uch longer. For Research Question 3, I was interested in how online communities provide support compared to these more established non profits. Second, I was interested in how online IBD communities exist in relation to medical professional support structu res. Much health information is shared in these online communities. Health information, once thought of as the domain and expertise of doctors and other medical professionals, is now being co opted by patient communities. Community leaders share health inf ormation, audience members seek health information, and new media technologies easily facilitate this information exchange. Note: throughout this chapter direct quotations that come from online material posted by community leaders, comments left by audien ce members, and responses audience members provided to the online survey are used as is, with all punctuation, spelling, grammar and spacing left intact. A New Kind of Support, and a Reaction against Existing Support Structures It is no secret that online communities function, in part, to provide support for people with illness. While many people find online communities helpful, these are not the only places that people can go for support. Established non profits like the Crohn s
139 and Colitis Foundation of America and the United Ostomy Associations of America have extensive networks of support groups and fundraising opportunities that serve to connect patients with one another. Even though people might not be close geographically to a support group, fundrais er, or educational event, these non profits also maintain social media presences and online message boards. Why, then, do so many people forgo the support of professionals to find support instead from patient communities? Although the patient communities in this study are extensive and have large audiences, they are not always refined or polished. Sometimes their websites can look amateurish; sometimes there are long gaps between postings. Most of these communities are run by individuals, and given the ti me commitment these communities require, community leaders cannot always give audiences much of their attention. But even with all these imperfections, tens of thousands, likely hundreds of thousands, are involved in these patient run and patient centered communities. In this section, I will show how the rise of these online communities is, in part, a reaction against existing non profit support structures. Then I will discuss the benefits members derive from online communities and how they view online supp ort versus face to face support. Support f or and C riticism of the CCFA The non profit that receives most of the support and criticism is the Crohn s and Colitis Foundation of America. Most everybody with IBD knows about the non profit, and many people hav e some experience with the CCFA, either through its events or educational materials. Community members and leaders alike find much to appreciate about its support structures. But in many ways, people can become very frustrated with how the organization ope rates (Some of these criticisms will be discussed in greater detail in Chapter 6).
140 One common criticism of the CCFA is that it is too focused on research and does not focus enough on the patient experience. The CCFA spends millions funding research for ne w treatments for IBD. It also has been instrumental in investigating the causes of the disease. Some people in the online community think, though, that it has gotten too big, too corporate, and has lost touch with the people it is trying to help. Jeffrey f rom A Guy With Crohn s said: 1 I ve grown up with them, and we thought, Okay, they are the leaders for Crohn s and colitis. Now from talking to people and doing some research, I m kind of getting the feeling that they ve lost touch with the community. The y re focusing more on trying to raise money and that s it. I think they got too big. I mean, big is not a bad thing, but I think they just lost sight. Several audience members agreed with this perspective. One audience member wrote about her distrust of the CCFA s motives: I m suspicious of the CCFA as I ve become suspicious of most disease related foundations and whether they rea lly want to find cures. Maybe I m jaded, but I don t know that I trust the CCFA any more than I trust big pharma. (female, ulce rative colitis, age 32) Another audience member wrote, however, that she thought the CCFA should conduct a different kind of research studies on the effectiveness of its educational materials: 2 The websites (in particular those of CCFA) are not based on l iterature and no research is being conducted to see if they are helping with disease management. I feel like in the last couple of years the CCFA has produced a lot of websites to help with disease management but they are 1 Unless otherwise note d, quotations from community leaders come for personal interviews. If a quotation comes from a blog, Facebook post, or other textual source, an explanation of the source precedes the quotation. 2 When I say that audience members wrote or an audience mem ber wrote, I am referring to the written responses they provided to my online survey. If an audience member s quotation comes from a blog comment, Facebook comment, or other online posting, I introduce the quotation as such.
141 just what someone thought would b e helpful but they are not based on the disease management literature. (female, ulcerative colitis, age 28) Some people also reported that when it comes to social media, the CCFA does not get it the same way patient community leaders do. One audience me mber wrote: The very informative websites run by national foundations are usually to formal with too much ja rgon to really understand well (female, indeterminate IBD, age 22). Maggie from Let s Talk IBD elaborated that she thought that the CCFA s online resources were more to the point than material from patient communities, and this directness made the organization seem more stiff and cold, whereas online patient communities seemed more personable: They re very professional. T hey re very, you know, Here are the fac ts. T his is what s going on , and you kind of feel like you have to stick to that when you re on. T hat s how I feel personally. But on my website, or all these & YouTube channels, I feel like you don t feel as strict. You feel like they re a re al person that you could be friends with them. Stephanie from Stolen Colon added that although the CCFA does have patient stories on its websites, these patients feel distant and inaccessible compared to members of patient run communities. She said that w hen she writes to somebody in the patient community, she knows: I m going to be getting an immediate response back. And like a really thought out one, not some generic answer, but somebody who really writes me a message. And I think a lot of times , when yo u get some o f these different organizations, it s hard to find that kind of personal connection as much. The CCFA, even though they share some people s stories, they re not sharing people s stories that you re necessarily emailing that person and talking t o them . Even though many community leaders take issue with the CCFA, many of them nonetheless support many of CCFA s initiatives. Stephanie has written on her blog about being involved with the planning committee for a local Take Steps walk. She has
142 also participated in CCFA s Team Challenge half marathon fundraiser. Despite believing that the CCFA has lost its focus and spends too much effort on research, Jeffrey also participated in CCFA s Take Steps walks. He wrote after one event: CCFA does this walk a ll over the country. This year was my first walk and I raised $506. I was worried I wouldn t raise any so this amount shocked me. I plan on doing this again next year and hopefully I will be in better shape. The best part of the walk was seeing all the support for us sufferers of IBD. One group raised over $27,000. The love is out there for us. YEAH. Several community leaders have also participated in Camp Oasis, a week long summer camp for children and teenagers with IBD. Heidi from Ostomy Outdoors wrote on her blog: My three hour drive home was not nearly enough time to process all the things I had learned at camp & all the inspiration I was feeling & and the amazing memories that will be part of me forever. & Volunteering at Camp Oasis was one of th e most valuable things I have done. I would highly recommend it to anyone. Jackie has volunteered at both the Wisconsin and Michigan camps. She wrote after one camp on her Blood, Poop & Tears blog: Man, I love camp. Every time I m at camp I wonder why I didn t think about that as a career choice back in my younger years. Camp makes people better versions of themselves. I do love it. The vision of the vanguard Community leaders construct their communities, and audiences participate in these communities, in part because of the perceived failings of existing support networks to meet their needs. However, the online IBD community also recognizes that existing support structures do have merit. The CCFA provides the most face to face support opportunities, som ething very hard (but not impossible) for the online community to do, and it also conducts much needed research into the treatment and
143 cure of IBD. Online communities exist as a counterpoint to the CCFA, but community leaders are not attempting to replicat e everything the CCFA does. That can especially be seen in the three non profits studied in this ethnography: Girls With Guts, The Great Bowel Movement, and the Crohn s Disease Warrior Patrol. C ommunity leaders said that they were not in competition with t he CCFA, but thought that they were filling niches left by the CCFA. Andrea said of the Great Bowel Movement s relation to the CCFA: We don t try to stub anybody s toes. CCFA definitely is helping research all things cure. We totally support people doing I mean, I do Team Challenge practically every year. There s this gray area, but I don t view us ever as competition. Andrea said the GBM s mission of raising awareness is in line with the CCFA s mission, albeit accomplished in a different way. She even as ked the CCFA national director of development directly: Are we a threat to you in any way? Or do you view us as a threat to you, because I know we re not? And she s like, No. I feel like you guys are great at what you re doing. She said again, too, Pe ople aren t going to come to our walks if they don t even know it exists. So if you guys are talking about getting involved, then that s okay with us. You guys don t do walks. You don t do, X, Y, and Z, b ut you start that ball rolling, and that s our goal . Jackie explained that one main difference between the CCFA and GWG is the focus: the CCFA caters to everybody, kids, adults, men and women. But GWG focuses solely on women: For us, we focused o n women as a strategic move. W e can tell wom en s stories. L ike all of us are women, so I can obviously tell that story . I can t tell the man s story. While Jackie fully supports the CCFA s mission and has participated in Team Challenge and Camp Oasis, which she thinks is the best program the CCFA does, she said that GWG wants to remain more focused on its audience:
144 And I have kind of said that our goal is to be patient focused. So none of our money is ever going to go to research. I can say that whole heartedly and honestly. We will never give money to research b ecause CCFA is doing that , and they re doing it well. Michael similarly felt a disconnection between the CCFA s mission and patients. Not only does he try to keep Crohn s Disease Warrior Patrol patient focused, but he thinks that because the non profit is run by patients, its perspective on how to help patients is fundamentally different than the CCFA s perspective. Michael commonly uses a parable when explaining how the CDWP is different from the CCFA (emphasis added): A guy s walking down the street & an d out of the blue a sinkhole happens. It s like 40 feet wide and 40 feet deep, and he s stuck at the bottom. He can t get out. And he s screaming, Help, help, help! Everyone passes him by. All of a sudden a priest stops by, and he looks down. Oh my God, I wanna help you! And he s like, Father, Father help me! So the Father says a couple of prayers and walks away. & Next a doctor walks by, and he says, Doctor, doctor, you gotta help me! Help me get outta here! And the doctor kind of looks at him and throws down a prescription. And he s like, What the heck am I gonna do with this? This ain t gonna get me outta here. The next person who walks by is his best friend. And he s like, Charlie! What are you doing? I m down here! And then his best fr iend jumps into the hole with him. And he looks at his best friend and says, Charlie! What are you doing? I m stuck down here! Now two of us can t get out! And his best friend turns to him and says, Yeah, but I ve been down here before , and I know the way out . And that s really what my organization is all about. It s people who know the way out. Lauren, being a CCFA staff member and friends with Andrea, had an interesting perspective on how these smaller non profits differ from the CCFA. She said:
145 Wel l, like the Great Bowel Movement in particular, they have a very specific focus, and their focus is just awareness and empowerment of patients to create their own awareness. Awareness is part of CCFA s mission, but it s only part, you know. CCFA s mission is to do research and improve the quality of life for children and patients . She also explained that the CCFA is a large organization, and with that size come certain benefits. However, large organizations can be tougher to change and to organize, whereas a smaller organization like the GBM can more quickly respond to its audience. So, I think, both are good and both have their place, but they re going to react really differently an d act very differently because the nature of the size and focus of the org anization. Benefits of O nline S upport People benefit from online support in many ways. Often in the literature this kind of support is called emotional and/or esteem support. This kind of support consists of compliments, prayers, sharing of stories, and showing empathy and concern when people are depressed, angry, upset, or frustrated. The phenomenon of emotional support was frequently observed in this study: people share stories on Facebook, encourage each other on Twitter, give advice on YouTube, an d acknowledge the difficulties one another faces. The literature clearly shows that emotional support takes place in online communities, so instead of reconfirming the forms of emotional support, this section discusses the ways that people benefit from emo tional support. Nearly all of the audience members surveyed shared how the online IBD community yielded emotional benefits. The following benefits were most commonly articulated by people in the online community: inspiration, confirming stories, creation o f friendships and pseudo family, finding understanding, and confronting fears.
146 Inspiration Many people spoke of being inspired by the online community, inspired to continue living with the disease and inspired to regain control of their lives. Community m embers draw inspiration not only from the community leaders, who share their stories in depth, but also from other community members when they share stories or post photos of themselves. Audience members wrote: The online IBD community is so inspiring. Not only do these people share their experiences with IBD, but they also manage to inspire and encourage others all while being real. The sense of comradery and community is what I needed after I was diagnosed. And the support! It is just so amazing. (female, Crohn s disease, age 19) The sense of community with others who understand the challenges associated with UC. I am often encouraged and inspired by others living with this disesse. (female, ulcerative colitis, age 38) Inspiration is a nebulous concept an d could mean different things to different people. What many people seem to find most inspiring is hearing accounts of people living productive and happy lives in spite of having IBD. A common fear among people with IBD is that the disease will irreversibl y change life as they know it for the worse. People fear the disease limiting their potential at work or at school, and they fear having unsatisfying romantic relationships. When people see stories of other IBD patients succeeding, they are inspired becaus e those stories show that the disease does not have to control a person s life. Confirming stories Many people with IBD report that they knew few or no people with the disease when they were first diagnosed. Consequently, people do not have a frame of ref erence for how typical or atypical their disease experience is. When people are first diagnosed with the disease, they often experience symptoms that they have never experienced
147 before. Something that most people take for granted defecating regularly and w ithout pain, blood, or mucus suddenly becomes extremely abnormal. Social comparison can be a powerful force for confirming that people are not out of the ordinary with their disease. Audience members wrote that they appreciated hearing stories from others who ve had similar experiences: Finding people in the same situation as you, and finding out weird stuff that happens to you happens to other people too. (female, Crohn s disease, age 23) Hearing other people going through their own trials seeing paralle ls, or seeing ways in which to deal with things that may yet come. (female, indeterminate IBD, age 23) When I started getting involved online it was quickly apparent that my experiences are more common than I expected. (female, Crohn s disease, age 24) Ev en though the particulars of everybody s disease might be different, people in the online IBD community often find plenty of similarities between each other. Finding similarities provides a paradoxical sort of inspiration: certainly if asked, likely nobody would say that they are happy that others have suffered in the same ways they have. Rather, people with IBD know that 1.4 million Americans have the disease, so they are happy when they finally find each other. One audience member wrote that she appreciat ed s eeing how similar our stories actually are. This group of diseases brings a characteristic chaos to life. Know that my story is not uniqu e is the greatest comfort to me (female, ulcerative colitis, age 41). Creation of friendships and pseudo family Naturally, people who have experienced such similar suffering develop unique relationships with each other. People mostly know each other through their health; in the online community, while people do share some stories related to their personal
148 lives, m ost discussions concern health. People learn the intimate details of each other s health situations in a way that they might not learn from their non IBD friends. Not only did many audience members describe the people in the online IBD community as friends , but many of them stated that fellow community members seem like family. Describing somebody as like family might sound clich, but community members do not seem to toss the term around lightly. Finding other people with the same condition can be such a relief, and many audience members spoke of the comfort they felt in telling community members who are otherwise strangers the intimate details of their health and struggles. Audience members wrote: I found a family of others with IBD on these websites. Th ey gave me a sense of hope and support. (female, Crohn s disease, age 20) Plain and simple...at a times when I feel like I m going through this alone, these people remind me that I m not alone. They lend support, tips, laughter, prayers. They ve become lik e family. (female, ulcerative colitis, age 46) It s made it so much easier to deal with. Without the form of an online community I would not have the amount of support that I have. I have made so many new friends through online IBD communities. (female, Cr ohn s disease, age 20) Finding understanding Sharing stories with others in the online community builds friendships. People appreciate hearing similar stories, and when they bond with others in the online community, they find a special understanding that is often lacking in other spheres of their lives. One woman wrote that the online community: [is] a place where we all know what each other is going through. We don t have to feel insecure or like we are complaining to people who don t understand, because everyone does. It s also great to give others advice if they are going trough a situation that you ve been through in the past or are going through presently. (female, Crohn s disease, age 20)
149 Understanding is achieved through honesty. Many people with IB D confess that they cannot speak honestly to their friends, family members, coworkers, or even doctors at times. Sometimes they feel judged or stigmatized. Sometimes they feel like their words are inadequate in expressing their pain. And sometimes they fee l like others do not want to take the time to understand. Generally, people in the online IBD community trust each other to tell truthful stories. While conflicts can happen in the community, as shown in Chapter 4, people rarely second guess each other s s tories. There seems to be a shared assumption that when people tell their stories, other people will believe them and take them seriously. For example, one audience member explained that people in the online IBD community understand her in ways others do n ot: I find that it helps me sort my feelings, because it is nice to know that other people are going through the same things that I am. Because many peo ple around me do not understand (female, ulcerative colitis, age 22). Confronting fears People with I BD might be scared about any number of things: negative side effects of medication; the failure of surgery to provide relief; not finding a romantic partner who can accept their condition; or losing a job and consequently health insurance. By listening to others stories, many community members report that their fears are assuaged: It has truly helped put me at ease with my illness. Seeing others speak positively or honestly about what they are going through gives me strength to do the same and have my own IBD website. (female, indeterminate IBD, age 19) In some ways, comparing oneself to others is beneficial when a person finds somebody who has experienced the same things, as previously discussed. Other
150 people, though, find stories of people with more diff icult health situations encouraging. There is always somebody who has a worse health situation, and when people realize that, it helps minimize their fears about their own situation. One woman wrote that the online community: j ust lets me know that others out there are going through what I am going through and that I am not alone and that they are others who are having a much more harder time with their disease, so I should always be grateful. (female, ulcerative colitis, age 36) It could always be worse again might seem like a clich, but many people find comfort in this kind of social comparison. Another audience member explained: Especially because the online community allows you too see real people and all the potential things could happen with the di sease. It scares me into not letting things get too out of control, which for me, is a great thing. It also helps me mentally when the effects of the disease just get me down (female, Crohn s disease, age 31) This is not to say that hearing worse health s tories than one s own is universally encouraging. Other audience members reported that hearing so called horror stories actually scared them more, the opposite of emotional support. One person said that the online IBD community s effects are n egative in that I can clearly see how bad it can get (female, ulcerative colitis, age 50). Face to F ace S upport vs. O nline S upport Many researchers have identified the advantages and disadvantages of online support versus face to face support (Wright, Johnson, Ber nard, & Averbeck, 2011). Many of these findings seem intuitive in retrospect: online communities make finding people easier; online communities can be accessed any time of the day; and online communities can provide much useful medical information. Face to face support has its own advantages: it is immediate and unmediated; it is easier to pick up on nonverbal
151 cues and facial expressions; and people can be supported in tactile ways (e.g., hugging and touching) and practical ways (e.g., giving a person a rid e to the doctor s office). But researchers have not fully explored the question of which type of support people prefer given the choice. Many people recognize that both forms of social support have a purpose, that one is not necessarily better than the o ther. Stephanie from Stolen Colon said: I definitely think that there is a big place for both. I think the online is especially important. Kind of in the beginning when it s a little scarier, but I definitely wouldn t give up having the people th at I can j ust go out to eat with and hang out with and talk about things. I mean, not even having to talk about Crohn s stuff and things like that. Just kind of knowing that they can understand. Stephanie described in one of her blog posts about her first experienc e going to an ostomy support group. When she was a child with IBD, she never felt the need to attend a support group, but when she found out she needed an ostomy at age 26, she longed to speak with other ostomates. When she first showed up to a face to fac e group with her husband, she was distressed to find most people older than 65. Even though she found it hard to connect with people outside her age group, she still appreciated having the group as a resource. She wrote: And I have also found that I really have enjoyed getting to know to know those a little outside of my age group. They are a fun and interesting group and I am fortunate to have gotten to know them. While Heidi really enjoys her support group, she recognizes that face to face support has so me limitations. She said that people are more likely to get to the point online, more likely to talk about intimate details of their disease quicker than they do in face to face situations: The face to face at the regular meeting is nice, but I almost feel that sometimes the online one people get a little more detailed with their
152 intimate information .. . You can be anonymous with it, so sometimes people ask more questions that they might not feel comfortable asking in a group. As mentioned, nonverbal cues can be nonexistent in online settings. Michael said that this limits him in some ways online: I think joking around is difficult to do onli ne because it s typing and if you re going to be sarcastic with everyone, sort of break the ice, you gotta be careful online because people who get your message when they re in severe pain or & But yet when you see them in person, you can kind of gauge what s appropriate . So I tend to be more monotone when I m online & I m very direct , and I keep it to the point. Even th ough many people recognize that online and face to face support both have their place, many community leaders actually prefer face to face support. This seemed surprising at first given how invested many of them are in their online communities. Adam said, I hope that people can realize that websites and the I nternet is really cool, and videos are cool, but face to face interaction, in my opinion, is way more valuable than throug h a website. Jackie explained that when she first met people with IBD she fel t a connection that she did not feel with her online community: I remember meeting them, and it s that aha moment of, People get me. Look, we re in person and we re laughing and you re not eating vegetables either & Doing Camp Oasis in 2010 & was the f irst year I met in person people with IBD. I left there feeling completely different because I had an ostomy then and I finally met people who understood me .. . I mean, I had been blogging for like 8 months at that time, but I still didn t really know anyb ody. Jason said face to face support opportunities allow people to connect in ways that are almost impossible online: Yeah, I think I prefer a face to face versus an online support group, just because, I think it gets you really motivated to help people m ore. & It s so much more intimate to look into somebody s eyes and say, I understand what you re going through and I want to help, or I want to be a sounding
153 board , which you can t get that through social media, whether it be tone or just the ability t o write whatever you want and not have any consequences. Even though Lauren from Forward is a Pace works for the CCFA, she has never attended a support group. But she does find immense support through the walks and runs she organizes. Lauren always envisi oned that support groups functioned like they are portrayed in the movies, with everybody being sad and complaining about their disease. She was relieved to find that face to face support is not always like that: Team Challenge was the fi rst time I, like, met people face to face who had Crohn s. And that was a big deal for me because I knew other people my age who were going through it . Many people, though, find more support online than face to face. This might not necessarily be because they dislike fac e to face support, but that they have not had good experiences with face to face support, so they refocus their energy and effort in the online community. Audience members wrote, for instance: people who do not have any ibd problems have no clue what i go through. & people in these groups understand what i go t hrough.. even though they haven t met me face to face they seem to care about me and how i am doing. (female, Crohn s disease, age 34) They make me feel like I am not alone in the everyday struggles w ith the disease and situation. People on these sites totally understand. My husband still does not understand the difficulties (female, ulcerative colitis, age 54) Sometimes people have an awkward experience at a support group, which turns them away. Fern pixel said that her first support group experience convinced her that online support was more favorable for her: At one point I went to a CCFA meeting, and I don t know ; it wasn t my cup of tea. I thought it was a little strange. So I was like, Okay, um, it s cool that the work that you do, but I don t think this is for me! (laughs) So I went to the one meeting and I was like, Oh, okay, this is what this is
154 about. I think I feel more comfortable doing the online thing. I tried! (laughs) Jeffrey said on line support allowed him to meet people around the world, giving him a global awareness of the disease that he could never experience face to face: Y ou can talk to a lot more peop le and reach a lot more people . If I was just to say something out loud here, my community might hear and that s it. When you go online, you re reaching t he whole world. & It blows your mind to realize t he disease doesn t discriminate. I t s global , and it s sad that it is so big and gets so little attention. Health Information: Cha nging Views on the Role of Medical Professionals Previous research has shown that people in online communities often share health information, sometimes termed informational support (Braithwaite, Waldron, & Finn, 1999; Eichhorn, 2008; Ginossar, 2008; Mo & Coulson, 2008; Qian & Mao, 2010). Some researchers have gone beyond this to evaluate the quality of health information. As shown in Chapter 2, many scholars are dissatisfied with the quality of medical information available online. This section takes a step back from the evaluation of online health information to explain more fully why and how people share health information online. The relationship patients have with online health information is complex. I will explore how health information is shared, how community leaders define their roles as disseminators of health information, and how community leaders report reactions to their communities from medical professionals. I will begin, though, by examining the love hate relationship the online IBD commun ity has with the medical professionals entrusted with their care. Criticism of M edical P rofessionals People with IBD see the doctor a lot. Because the illness is incurable, doctor visits, procedures, tests, labs, and trips to the pharmacy are an integral part of daily life.
155 While many patients do appreciate the care they receive from medical professionals, many also report bad experiences with doctors, nurses, office staff, billing staff, or insurance companies. Because people with IBD spend so much time i n the healthcare system, it seems inevitable that they would have at least a few negative experiences. Kelly from Sick Girl Diary, who spent many years undiagnosed, made a video entitled Things Doctors Say When They DON T Know What s Wrong. She began, Let s talk about things doctors say when they do not know what s wrong , cause I m sure everyone out there has heard these comments way more than one time. In three minutes, she gave 33 responses she or others have heard from doctors, including: You reall y shouldn t be in that much pain. You re really young. I m not sure what s going on here, so we may just have to open you up and take a look. You know, you should really just start getting better by now. Many of the commenters on this video shared their o wn frustrations with doctors who could not tell them what was wrong. One person wrote: The problem today is that Doctors are not taught about real problems people have...they are taught about writing prescriptions and doing surgery....that s it. Forget abo ut curing you or finding the MECHANISM of the real problem....just take these pills and call me in the morning. Maggie from Let s Talk IBD said that she tried to ask her doctor about a new treatment option. She had been reading about people ingesting a pa rticular type of worm that was supposed to help balance the gut naturally. Her doctor, though, was not very engaged in the subject: W e were very interested in this study because we felt that the resu lts were incredible for it, and it didn t seem like my me dicine was working for it at the time. I went to talk to my doctor about it , and she kind of blew it off , like , Oh, yeah, yeah. I ve heard of that. Don t do it. And not really going
156 into why. & So I feel like that s created a little bit of tension becaus e both my dad and I are kind of annoyed. Sometimes community leaders express their anger with their doctors online. Jackie on her Blood, Poop & Tears blog has not been afraid to name names of specific doctors she likes and doctors she dislikes. In one blo g entry she wrote a No BS Doctor List where she gave her honest impressions about all of the main doctors she has seen. She wrote of one colorectal surgeon: Total fucker. Honestly if you read my last entry, this is the doctor I talked about that made fun of me, didn t introduce himself, ect. Had I not known who he was before, I still wouldn t considering he never told me his name. Rude, no bedside manner, and clearly in one hell of a hurry. I dont know if hes smart or good at what he does because he liter ally did not talk to me or give me any suggestions on how to fix my problem. Audience members also reported bad experiences with doctors. Many wrote about how their doctors were not as supportive as they would have liked: I read forums to see how long it should take to respond to medications for treatments so I can decide if something is working or not. Ideally this would be something that I would discuss with my GI doctor but that does not always happen. (female, ulcerative colitis, age 28) Sometimes c ommunities air their frustrations with doctors in the most unexpected places. On Girls With Guts Facebook page, a young mother posted a photo of herself and her daughter. The post described that she had been sick with Crohn s disease for seven years and h ad been untreated for five years. The post ended by soliciting support and encouragement. While many people offered support, others asked why she was untreated. She explained that she did not have insurance and lived in a strange financial borderland where she could not get Medicaid or disability. From there, the audience berated the medical industry, with many people telling their own stories about struggles they have had with healthcare:
157 This health care system is so broken. If you can find a compassionat e naturopath who works on a sliding scale financially (or see you pro bono), they may be able to look at things like stress, digestive enzymes, pH balance and other things regular docs tend to overlook. My GI guy was shocked at my progress and it s not progress i made on his fancy pricey drugs alone. Healthcare in the US sucks and there are so many people like Denise who cannot afford the care they desperately need. So called obamacare will help a little but we need a single payer system that would give all of our citizens access to affordable care when they need it. Unfortunately, this is unlikely to happen with an Obama administration and certainly not with Romney. Many community leaders seem to provide health information because of perceived failings of medical professionals to provide the information they need. While not every bad experience is because of medical professionals failing to provide medical information, it seems as though community leaders want to equip their audiences with enough informa tion so that audience members do not suffer what they have suffered. Support of M edical P rofessionals While many people have had terrible healthcare experiences, no community leader had a universal disdain for medical professionals. Many of them had very good things to say about their healthcare, which is what makes the relationship between patients and medical professionals so complex. Heidi discussed on her blog a series of complications she experienced because of a couple different medications she was o n. However, she was not upset with her doctors. She said: I developed avascular necrosis in my shoulder from prednisone. And that s just really rare, so I never knew that that was a side effect of that medicine or anything, but I knew my doctors were reall y trying to get me off the prednisone. T hey admitted that that drug in particular is bad news. & I don t really blame them for that either. I mean, I was super sick so they were doing what they could. Part of that was just bad luck.
158 Jackie, who was very c ritical of some doctors in her No BS Doctor List also had good things to say about some of her doctors. She wrote of one doctor: This man saved my life. Literally. It was a fluke that I met him when I did. I had just been discharged from the hospital the day before, and I was worse than when I went in. I met him at his office, and he took some short tests on me, and told me that if I didn t get to an ER, I would go into heart failure and die. Something & apparently no other doctor could tell me. & He is sma rter than any other doctor I have ever met, literally. Even though people do share horror stories about their doctors through social media, the opposite also occurs. The Great Bowel Movement asked on Facebook: Who is satisfied with their GI doctor relati onship? If so, what do you like best about that relationship? Many people shared how wonderful they thought their GI doctors were: i love my GI doc! he is a great listener. probably my favorite thing about him is that he isn t afraid to try new meds/treat ments and if something isn t working he is not afraid to say so. he is also really great about cutting back on my meds and doses to find a good balance so i m not over medicated. The Great Bowel Movement created an award for nurses during National Nurses Week 2013. Community members nominated nurses who went above and beyond, or really made an impact on their journeys with disease. They gave three nurses prize packages consisting of GBM T shirts, hygiene products, and cards for free Starbucks drinks. The y featured the stories of the three award winners on their website. Perhaps the community leader with the most complex relationship with doctors is Michael from Hospital Patient, who has been struggling with Crohn s disease and other chronic illnesses for 30+ years. He told many stories about the struggles he has faced over the years from doctors who did not trust him or provide good medical care. But at the same time, he has also has had many supportive doctors. He said that while patients are experts on their own experiences, doctors play an important role in the management of health:
159 I alway s tell patients & you always have to respect docto rs, like don t ever think that you know more than the doctor. You might, in your particular situation, but don t und erestimate. You always got to be respectful of the position, you know, regardless of who the doctor is. And as long as they re respectful, I think it s a collaborative relationship. Because many community leaders have good experiences with their doctors, they share health information not to usurp medical professionals authority and area of expertise, but to supplement doctors who are either too busy to fully educate their patients or cannot offer the type of information patients are looking for. When comm unity leaders support and criticism of medical professionals are taken together, it seems that community leaders supplement the information about the patient experience that doctors cannot provide, yet they are not trying to overstep their boundaries and encroach on the authority of medical professionals. Sharing H ealth I nformation and M edical A dvice Community leaders and members alike often share health information about IBD. The following topics are frequently discussed in the online community: Symptom s of IBD Conventional treatments for IBD Surgical treatment options Alternative treatments for IBD, including supplements and special diets Complications from drugs, the disease, or surgery Ostomy care When people share health information, they often tell others to follow up with their doctor before acting on any information. Doctors are considered most knowledgeable about the disease, especially when community members have very specific questions. While ideally people with IBD would ask medical questions of their
160 doctors, this is not always possible. Jackie explained in simple terms why this line of thinking can be unrealistic: You can t get a GI appointment for four months a lot of times, so what are you going to do? Many people report either having to wait a long time between doctor s visits, or the difficulty of trying to reach medical professionals in between visits. Thus, sharing of health information between patients is almost a necessity given that the healthcare system is often overloaded. When c ommunity leaders share health information, they seem most comfortable speaking from personal experience. Lauren said: I ve had people write and ask me to review things like all natural cures & and that hasn t been my experience. I take medication and it wo rks very well for me, so that s what I m comfortable talking about & Otherwise, I would never write a post saying, Here are some great treatment options! because I m not your doctor. Stephanie added that she is always clear with her viewers when she is speaking about her experience: Whenever I talk about medical or health information, I m always very explicit to say that, you know, This is what my experience was. Many community leaders are bothered when people speak outside of their personal experien ce, especially when they speak in absolute terms about treatment options. Stephanie said: I think that anybody who tries to go out there and say, Hey, this works and this is what s going to make you better, or this is what s going to make you worse is ki nd of just asking for trouble because that s just not how, these diseases don t play by those rules. A person s experience with illness is a kind of health information, one that community leaders and members seem comfortable discussing. Many community lea ders, though, try to separate this kind of health information from medical advice, which some people are less comfortable giving to members. Andrea explained the Great Bowel Movement s stance on medical advice:
161 W e re never really trying to give advice. All we can tell you is what we ve been through and what has worked or didn t work, and if somebody can relate, that s great. & W e re more concerned with the people side of it and not the medical side of it. Many people see differences in the kind of health i nformation doctors provide versus what patients provide. Heidi explained that doctors and patients each have something to offer when it comes to medical information. Her view is largely shared by the other leaders: I think sometimes doctors and nurses who haven t been through it don t necessarily & I mean, they know the textbook version of things, but they don t know what it feels like to have gone through it, the problems, or even how great it is. & So the doctor might know what s normal and what s to be exp ected, but no, they haven t experienced it. Medical information that patients provide supplements the information doctors provide. As long as the person is sharing his or her own experience, no harm is done, according to this perspective. People in the on line community are seen as experts on their own story and their own illness, and a person s experience with illness is assumed to be 100% plausible in the case of one instance: that of the person telling the story. People in the online community rarely dis believe somebody s story. Community leaders and members alike seem to find value in health information of the personal experience kind. For many people, medical advice seems to be a step beyond personal experience as health information; instead of just sh aring what has happened to her or himself, the person who gives medical advice is saying what should happen, what other people should do about their health. While many community leaders say they do not give medical advice, not everybody shares that view. Jason from Awestomy said that
162 there are some situations where it is acceptable for patients to give each other medical advice: If it s something like skin irritations or, I think I m having a blockage or something like that, I think that that s a common enough thing that people can give their advice that I don t think would be detrimental. If it s anything more serious or discoloration or I don t know, it just seems like there s a multitude of things that can happen. I always want to be clear and let peop le know that we are not medical professionals, even though sometimes it seems like they expect us to be. Jackie confirmed that medical advice is okay to give if the patient giving it has a lot of experience with the issue: I feel okay about giving out med ical advice when I know that it s something that I can speak strongly to. If it was about, I have a blockage. Can you talk to me about that? I never had a blockage, so I don t feel comfortable talking about that because all I know is other people s exper ience s with blockages. I ll tell you how I know they worked it out, but I ll also say, I don t know for sure. Yo u might wanna call your doctor. Community leaders commonly share health information by publicly answering questions on their blog, Facebook, YouTube, Tumblr, or other social media space. Many leaders get the same questions from viewers time and again. Publicly addressing these questions makes the community leader s job a little easier. For instance, Kelly often replied to anonymous questions in dividuals had posted on Tumblr. One person asked her: Ok I think I have IBD but im not really sure what are some symptoms from someone first hand? Mayo Clinic isnt always as helpful as someone who suffers from it! Thank you :) Kelly began her reply by pro viding medical information common information about the disease but then ended with a caveat to seek a doctor: Aww, I completely understand. :) Everyone is different, not everyone gets all the symptoms, but most are accompanied by symptoms such as: frequen t diarrhea, urgency,
163 cramping, bloating, weight loss, blood in stool, ulcers, and reduced appetite. If you are experiencing symptoms, you need to get checked out by a doctor as soon as possible. <3 Sometimes community members share information with which community leaders disagree. When this happens, community leaders often take it upon themselves to correct what they perceive to be misinformation. For example, a commenter once shared on Fernpixel s blog his or her idea about a cure for IBD: AS ive menti oned in a comment to you on youtube, there is a man who has supposedly found a cure. When i was on the diet, i wasn t allowed to tell any doctors his name or what I was doing because i guess it was under the table but basically, with a few months to a ye ar of this c ertain diet and a few meds, he s cured a few people, even one with colon cancer. The person then explained some of the food options of this diet. Fernpixel tried to respond politely, but disagreed with many of the commenter s claims: Thanks fo r sharing your story. I m sure there s a valid science to your diet, but I don t think I would try the cure you mentioned without more information on it. It just seems very doubtful to me. Mostly because you are hiding this information from your doctor. Colitis is unique because it is a different experience for everyone. I m not sure if your cure will work for everyone. I know that the diet I am on is not for everyone either, but it happens to work for me. Medical advice does not always concern sympto m management and treatment options. Community leaders often provide medical advice of the emotional kind, telling patients what they can expect when trying a new treatment, how to cope with changes in lifestyle because of the disease, and what attitude the y should have toward the disease. Jason once posted on Awestomy an article entitled What To Expect After Ostomy Surgery. The blog was in a way descriptive of his experience with surgery, but also included these pieces of advice:
164 My advice to future ostom ates is that after surgery try to relax your mind and understand that the hospital is doing the best it can for you. You need to do your best to come to terms with the fact that you may be in the hospital for a while and accept that this is the start to th e road of recovery. It s extremely important to try and do a little bit of exercise as soon as possible. Something as simple as walking will work wonders for your strength and demeanor. My advice on being at home is much like it was in the hospital. Don t try to do too much too fast. You will be advised to be wary of doing anything too strenuous, especially be careful picking up items that are more than ten pounds. Other community leaders provide medical advice in the form of helping audience members sort through medical decisions. Heidi said her most popular blog post, by far, was one in which she laid out her reasoning for getting a permanent ostomy and not pursuing a J pouch. She said with her active lifestyle, a permanent ostomy just made more sense. Th is post has 70+ comments: usually Heidi s posts have a few comments, 10 12 at most. In the post she explained what her concerns were and how an ostomy addressed those concerns better than a J pouch. She wrote near the beginning of the post (emphasis in ori ginal): The point of this post isn t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice. This type of post is fairly common ; community leaders often justify the treatment options they pursue and other aspects of managing their health. While this type of post might seem more like a personal story and not medical advice, community leaders often write these posts at the request o f their audiences. Community members often want to know how a person made a decision to have surgery, or how they decided to pursue one alternative treatment method over another. Community members ask for these kinds of posts so that they can make better d ecisions about their own health. These
165 kinds of posts indirectly could be seen as medical advice, as they provide a framework to assist audience members in making medical decisions. Audience members very much appreciate the health information they find in the online IBD community. Many audience members wrote about the value of the health information available in these communities: It is helpful to see how other people deal with certain aspects of the illness and have the potential to ask questions and keep track of your own progress/illness (female, ulcerative colitis, age 18) It s good to be able to see others experiences with things that I may be going through, get opinions on medicines and procedures, etc (female, Crohn s disease, age 21) Audience memb ers also explained, just as community leaders did, that personal experience is a different and necessary kind of health information than what medical professionals are able to provide: I like r eading about individual patient s experiences though anecdota l, this is sometimes more helpful than the technical information I receive from my doctor or from other articles and websites. (female, ulcerative colitis, age 29) Community L eaders R esponsibility for H ealth I nformation While people in the online IBD com munity talk about very technical issues with treatments, symptoms, and complications, community leaders do not let their audiences get away with saying just anything. All of the community leaders spoke about the importance of providing accurate health info rmation to their audiences. Lauren explained: M aybe it s the teacher in me, but it s like a gigantic pet peeve of mine when I see people positioning themselves as h ealth activists online but then I ve seen someone who is pretty w ell known in the IBD commun ity & on their About Crohn s and C olitis [page] they called it irritable bowel disease, and I was like, Oh my gosh! You can t say you re an activist and
166 then not have the right name of the disease! Like, it s inflammato ry bowel disease! Come on, man! So metimes community leaders feel incredible self imposed pressure to be accurate in their reporting of health information. Fernpixel said that when she first started her community and got a positive response from people she was excited, but when she thought about the magnitude of what she was doing, she began to question her work: I was very, very excited about it in the beginning, but then I think I put too much pressure on myself because I was one of the first peo ple. & P eople started looking to me for medi cal advice , and I m like, Whoa! I m not a medical doctor! Slow down! and I got scared. I m like, What if somebody looks at my stuff and then something bad happens to them and, you know, I m going to be responsible. Responsibility extends to other are as as well. Product manufacturers and medical suppliers often contact ostomy bloggers, asking them to review their products in their videos or on their website. Community leaders spoke of the need to be accurate about product endorsements, especially if th ey are compensated. Heidi explained that she chooses who to endorse very carefully: Sometimes I refuse. I only try to review it or try it out if I think it s something that fits with Ostomy Outdoors, like something you d use in the outdoors. I try to have that as a filter. Of all the community leaders, Maggie has the most experience reviewing ostomy products. In one video, she reviewed ostomy products from a company called Salts Healthcare. She was searching for a new ostomy company because the supplies f rom her old company were irritating her skin. In the video she talked about the products and the customer service experience. She noted in the description, though: *This was not a paid review. This video was made on my own. In another video, she reviewed a
167 product called the Equalizer from the company Stomaplex. This time in the description she wrote: Just to let everyone know, yes I was paid and given these products with the intention of modeling them for the Stomaplex website. However, I do truly think they are terrific products. While community leaders seem to have carefully considered their responsibility when disseminating medical information, their viewers might not share the same beliefs. Social media is challenging; community leaders want people t o talk with each other about their experiences, yet regulating social media is difficult because members might have a different view on how to responsibly handle medical information than community leaders do. Jackie explained Girls With Guts policy when i t comes to audience members providing medical information: We re obviously okay with it because we do it all the time, but we do read the responses . I f somebody s giving wildly wrong information, we will probably make a comment about that and redirect the conversation a different way, or say, That is not a medically approved treatment, just so you know, something, something, something. Sometimes it s getting creative in telling people that they re wrong without saying, You re wrong. Andrea said that Th e Great Bowel Movement has a similar policy of monitoring everything that people write. They try not to step into conversations unless they have to. She admitted, though, that they have not had a problem with people giving misinformation: W e ve never had a nybody put anything antagonistic on there or, you know, hating Remicade or something blatantly on our page. Either it s been dumb luck or people just don t really, that s not their outlet for that kind of thing. I don t know. Whenever people discuss treat ments, surgery, symptoms, or complications, much of what they post is in line with what the CCFA and American Gastroenterological Association teaches about IBD. Jackie theorized that because the online IBD
168 community is often made up of people with a very s evere form of the illness, these people tend to be better educated: T he people who are a part of our community want to be a part of the community and have been through a lot of crap the way that we have, so they re not the sort of fair weather patients, th e ones who are generally doing okay but sometimes have issues. They re all the ones who are looking for help because they re having problems. And to me, those are some of the most educated people that I have met in this community, the people like me who di dn t have a smooth ride. T hey had a really bumpy ride, and those are the ones who learned about everything because you had to, because you lived it. Written medical disclaimers Throughout the interviews, every community leader talked about the importance of giving accurate medical information. However, this data collection method might have been biased, in that it might have been unlikely for an individual to tell a researcher that s/he knowingly gave out misinformation and believed that was acceptable. Wh ile social desirability is a danger of the interview methodology, the ethnographic method allowed me to confirm or disconfirm what community leaders told me because I thoroughly studied what they posted online. At some point, all community leaders provided some sort of written disclaimer about the medical information they provided. For example, Stephanie once wrote about the different types of Crohn s disease and how it is treated. She ended the post with: This post is merely a conglomeration of information from CCFA , UNC School of Medicine , and Wikipedia . Since this is not an academic paper, some of the information I took straight from these sources without worrying about putting it into my own words. I am in no way trying to plagiarise and pass this off as my own work. Oftentimes a community leader will say in a post, video, or comment something along the lines of, This is only my personal experience. Please consult with your doctor as they know your situation better than any of us do. Community leaders often face
170 a written disclaimer. Providing caveats for every piece of health informati on would likely get cumbersome. Frequent members of a community will come across disclaimers at some point. It might not appear in the first post they read, but on some post they will find it, or they will learn that community leaders are not experts if th ey contact them directly. Response from M edical P rofessionals to O nline C ommunities As seen, online IBD communities have a complex relationship with medical professionals. Some people criticize medical professionals, yet many in the online IBD community have great respect for their doctors, and community leaders often defer to the expertise of medical professionals. While this ethnography did not examine the online IBD community from the perspective of medical professionals meaning examination of websites created and maintained by medical professionals what I can offer is evidence of how medical professionals have reacted to some of these online communities. While it does not happen often, sometimes a medical professional will comment on a website. On He idi s blog, for instance, a certified wound and ostomy care nurse (CWOCN) commented: I am a CWOCN and was looking for additional resources to assist one of my patients who is having a recurrent issue. Got a couple ideas. THANK YOU for your candid blog. I w ill be a follower for sure! Yall are the Folks who LIVE AND BREATHE ostomy 24/7. I am only an eager assistant. Nurses often comment on the usefulness of ostomy videos. Many community leaders have posted videos about how to manage ostomies, and sometimes n urses find this material useful for teaching. Maggie said, I had a few different nursing teachers emailing me asking if they could use my videos in their classes, and Heidi said that her
171 videos have helped nurses offer better suggestions to their patient s. One student commented on a video Maggie made about changing an ostomy appliance: Very inspiring, thank you so much for being so confident and sharing these videos. I am a student nurse and i m currently looking at patients who suffer with long term cond itions and you ve shown me that strong people like you can deal with anything that is thrown at them in life, including IBS! Thank you x Occasionally community leaders will share their work with their doctors or surgeons. Jackie said her surgeon supported the work she did with Girls With Guts: M y surgeon knows all about it. There are flyers at his office. We gave flyers to all the girls at the retreat if they wanted to give stuff at their doctors offices and talk about it. Like my neurologist knows about Girls With Guts and my professors in school knew about Girls With Guts. Leaders did not always tell their medical team about their online community, perhaps because they had a bit of humility about their online work. Sometimes, though, medical professiona ls will come across the work of their patients by happenstance. For example, Kelly told a story about how this happened to her in the hospital: O ne of my doctors from the hospital and the nurses , they saw that I was writing when I was in the hospital overn ight ... (laughs) And they were like, What are you doing? And I m like, Oh, I m writing . A nd then they were asking me questions about what I did , and they wrote down like all my websites, and they follow everything. Lauren has developed relationships with a few doctors through her role as a manager of Team Challenge. One doctor occasionally emailed her about her website: Dr. Rubin has corrected me before, which I appreciate because I think it s important to be accurate. & I t was when I was going throug h my transition from Crohn s to colitis and freaking out about the fact that I had colitis and it s more genetic so I ll pass it on to my children .. . H e emailed me and was like, FYI [for your information] it is a little bit more genetic , but statisticall y it s like this much different and you need to stop panicking . & Which I appreciated because A, it helped me stop freaking out a little bit, but B, I don t want to be spewing inaccurate information, so I appreciated that.
172 Sometimes audience members said that their doctors referred them to online IBD communities. Heidi said that her surgeon really appreciates the work she does online and actively shares her site with his patients: I know from my surgeon, you can imagine, as a surgeon you have this ability sometimes to heal people through surgery, but a lot of times they re not that open to it. Ostomy surgery, a lot of people say th ey d rather die than have that. I think from my surgeon he s been really appreciative of having my site show to patients, like, Here s someone going and leading a full life with an ostomy, so he uses it in that way just to show, Hey, this isn t going to be the end of your life. I love that . While some medical professionals participate in the online IBD community, either throu gh consuming content or referring patients to websites, these people are unfortunately in the minority. There is little interaction between these two spheres of authority: the medical authority and the patient authority, and community members notice this. An audience member wrote that one major problem with the online community is t he lack of a lot of the healthcare professionals being in the online communities, so they don t see what our biggest worries are or what we literally go through daily. A lot of t he online communities are unknown or blocked from healthcare personnel while they are in their clinic. (female, Crohn s disease, age 34) Summary Research Question 3 asked: How do community leaders relate themselves to the medical establishmen t and existi ng support networks? Both medical non profits and medical professionals offer patients with IBD informational and emotional support, but sometimes these sources are lacking. Many people in the online community think that established non profits, most nota bly the CCFA, do not always offer the kind of support patients are looking for. Many people reported dissatisfaction with their doctors about how they were educated or not educated about their disease and treatment options.
173 Online patient communities, then , serve as a counterpoint to existing support structures, meant to address the unfilled support gaps. The online community, though, does not speak with one voice. Many people are appreciative of the support they receive from their doctors, even though they recognize that doctors cannot always provide the kinds of medical information they are looking for. Even though many community leaders criticize the CCFA some have even set up their own non profits to address support gaps left by it many still participate in CCFA fundraisers and educational events. The relationship patient communities have with existing support structures, then, is nuanced and complicated. Even though some community members are very active online, and all community leaders spend many hour s each week online, many people recognize that online communities have their own challenges, and long for face to face support opportunities. Some people are active in the online community because they do not receive quality support from their friends and family in the physical sphere, yet others are active in the online community and have good sources of face to face support. While many people in the online community reported dissatisfaction with doctors or other medical professionals, the online communit y generally is not antagonistic or distrustful of medical professionals. Most people recognize that medical professionals play an important role in the treatment of disease. But people in the online community often look for something medical professionals cannot be expected to provide: information about how the disease affects a person s day to day life. People want to know what side effects others have experienced from medication, for instance, or what it feels like to undergo a surgery or procedure. They want to know how others have told
174 their family, friends, coworkers, and supervisors about the disease, and how to handle embarrassing symptoms. When people share health information, they primarily share stories about their own health experiences. While peo ple in the online community are clearly comfortable with this, community leaders still think that they have a responsibility for disseminating accurate health information. Some leaders are not comfortable giving medical advice, telling people what they sho uld do about their health, but others are comfortable providing medical advice if they have considerable experience with the medical issue. Community leaders also frequently tell their audience to check with their doctor before acting upon medical informat ion or advice, and all of them include some sort of written disclaimer about medical information somewhere on their websites.
175 CHAPTER 6 RESULTS : THE FLEXIBILITY OF C OMMUNITY AND DISEASE Communities do not exist in isolation; neither do online communities stay within the confines of the Internet. In this chapter I provide evidence to answer the final two research questions. Research Question 4 was concerned with the way the physical sphere sometimes called the real world intersects with the online sphere . Because this ethnography was mostly concerned with the functioning of the online IBD community, I cannot provide exhaustive evidence for what happens to patients before they enter and after they leave the online sphere. However, I do have considerable ev idence about the way the physical and online spheres overlap, which will provide a foundation upon which to conduct future research into the interactions of these two spheres. The final research question was concerned with the ways people with IBD use soc ial media technology to construct or reconstruct the disease. While IBD has a biomedical definition that is commonly accepted by both patients and medical professionals, the disease also carries with it many social connotations. In this section I discuss t he many, and sometimes differing, ways people with IBD use Internet technology to shape conversations about the disease. Note: throughout this chapter direct quotations that come from online material posted by community leaders, comments left by audience members, and responses audience members provided to the online survey are used as is, with all punctuation, spelling, grammar and spacing left intact.
176 Intersections and Overlaps between the Physical Sphere and Online Sphere As explained in Chapter 2, many people conceive of the online world and the physical world as separate spheres of reality. While unique things happen in the physical environment that cannot happen online, and vice versa, the spheres are not completely separate, especially when it comes to managing health. For example, physical manifestations of IBD, such as bleeding, joint pain, or intestinal scarring, happen entirely to the body in the physical sphere. However, in the digital realm, people can talk about what has happened to them becaus e of their disease; they can meet others with the disease; they can learn about the disease and how to treat it; and finally, in some cases, they might take what they have learned online and apply that advice in the physical sphere, ideally to positive eff ect. The physical and online spheres are not so much separate spheres of reality that a person bounces from one to the other. In this section, I show four major ways these two spheres intersect with each other. Researchers already know that people go onli ne to find support and seek health information. I show how these motivations influence what people with IBD do online and how they behave when leaving the online sphere. Next, I show how people with IBD extend their advocacy work into the physical sphere . Finally, I explain how relationships forged in the online world are strengthened in the physical sphere. Drivers of O nline S upport S eeking Researchers have uncovered considerable evidence, as discussed in Chapter 2, that people participate in online sup port groups to receive emotional support. While this observation is confirmed by this study, seeking support is more complicated than a person having a deficiency of support in the physical sphere. In other words, to say
177 something like, People with IBD of ten lack face to face support for their disease, so they go online to find people with the disease who will support them is a bit simplistic and a warping of reality. Unfortunately, many people with IBD face stigmatization at some point. Almost everybody I surveyed or interviewed had stories about ways they were stigmatized in the physical sphere. One audience member wrote: 1 When I was first diagnosed people were really weird about me being sick. People would not come over to my house in case the y got si ck from me. One of my parents friends decided that I was pregnant and that was why I was sick and so we told everyone that (which was embarrassing for an 18 year old girl). People at church stopped talking to my sister because I was sick. Many people wh o I thought were my friends stopped talking to me or to my family. (female, ulcerative colitis, age 28) Many, though not all, of the community leaders also had stigmatizing experiences in the physical sphere. Kelly said, I lost a lot of friends after hig h school because some of them did understand, but it was too much for them, like I totally understand. It is a lot of responsibility to be friends with someone who is that sick. 2 Stephanie has been sick since a young age. She recalled back in middle schoo l classmates spreading rumors about her: I didn t know this at the time, but I remember my mom was having to defend me against rumors that I was anorexic and that sort of thing , and that s why I was losing so much weight. It seems reasonable that peopl e who have had stigmatizing experiences in the physical sphere would then seek out support from other people with chronic illness in 1 When I say that audience me mbers wrote or an audience member wrote, I am referring to the written responses they provided to my online survey. If an audience member s quotation comes from a blog comment, Facebook comment, or other online posting, I introduce the quotation as such . 2 Unless otherwise noted, quotations from community leaders come for personal interviews. If a quotation comes from a blog, Facebook post, or other textual source, an explanation of the source precedes the quotation.
178 the online sphere. The data I collected, however, reveal a counter intuitive reality: many people who have experienced stig ma also reported having great sources of support from family, parents, friends, co workers, and medical professionals. Additionally, many of the audience members surveyed reported that they had great sources of offline support and could not think of a sing le stigmatizing experience, either in the physical sphere or online sphere: My family is my biggest support. They have been behind me since day one of this fight. Also, my colorectal surgeon is amazing, she is more like a friend than a doctor. We really ha ve a bond and I think that help s a lot when dealing with Crohn s. (female, Crohn s disease, age 19) All my family, friends and co workers know about my ileostomy and always give me great support and encouragement (male, indeterminate IBD, age 36) At least among the people I studied, who seemed to be moderately to highly involved in the online IBD community, stigmatization or lack of face to face support is one influence of going online, but it does not fully explain why people seek online support. Some peo ple reported that they got different kinds of support from different sources, implying that a complete lack of face to face support is not solely what drives people online; rather, the online IBD community offers a different kind of support than face to fa ce sources. One audience member explained: I think there are many different forms [of support] . I get knowledge from my medical team. I get laughter from my friends. I get understanding that my research (phd) has dropped off .. . (female, Crohn s disease, a ge 48) Sometimes something that happens in one sphere crosses into the other. One audience member wrote: I receive support from my family and friends as much as they are able though there is a disconnect in what they understand and how well we are able to relate to each other about my disease. One thing that online support groups and reading the blogs and interacting online has done is
179 allowed me to understand better how to be more open with my family. I find that I will watch a youtube video of someone sharing their story and then I will use that as a template to express myself. (female, Crohn s disease, age 30) As a person who has made many YouTube videos explaining my illness, I can confirm that engaging in online communication can enhance communicati on practices offline. For instance, in making videos, I had to be succinct with how I explained my disease and illness history: if I rambled too much, the video would be too long and boring. Making online videos allowed me to practice my own illness narrat ive in a safe and non judgmental environment. Another person wrote that social media technology helps her indirectly convey information about her disease to her family and friends: All my friends, family and co workers who are aware of my disease are supp ortive though they don t seem to come close to truly understanding, probably largely in part to the fact that I don t talk about it and try to seem normal . I often share the Facebook posts that relate to me the most so that they can get a little more ins ight without me personally having to talk about it (female, Crohn s disease, age 31) Health E ffects of O nline H ealth I nformation Another well known driver of participation in online support groups is the seeking of health information. As explored in Chapt er 5, people in the online IBD community share much health information and ask each other many questions about the disease. In this section I present anecdotal evidence about the effects health information has had on individuals in the online IBD community , based on participants responses to a question about whether and how the health information they found online affected how they managed the disease. Health effects generally fell into three areas: physical, emotional, and improving relations with doctors .
180 Physical health effects Many people reported physically benefiting from time spent in the online community. People share information about treatments, complications, foods to try, symptoms, and in the case of ostomies, products to help manage their osto my. Many people obtained advice or information on new treatments to try: I have found answers, such as last year when I developed pyoderma gangrenosum [ulcers that develop on skin tissue] a month after my surgery; people helped me find ways to keep my appl iance s seal on longer, and I discovered a medicine that really helped me finally start healing. (female, Crohn s disease, age 21) These forums allow for me to try different methods to alleviate some of the sy mptoms associated with my Crohn s disease. Some times med icine doesn t cut it, and a home remedy co uld be more effective. I wouldn t know of any unless I didn t have my forums to refer to. (female, Crohn s disease, age 25) Some community leaders also found online health information useful in the manage ment of their disease. Jeffrey, for instance, talked about how he found two very useful pieces of information online: It s helped me find some new treatments. Like I never would ve known about LDN [low dose naltrexone] if I hadn t gone online and talked to people. I probably never would ve thought about going gluten free. And to me, those are the two that have made a world of difference. Up until a few years ago, I said diet had no role in IBD. And now I say the exact opposite. Jeffrey told his doctor abou t what he found online, and to his surprise and appreciation, his doctor did his own research on the treatment before prescribing it to him: Any questions I feel like I can ask him, and I know if he doesn t know, he s gonna find out the answer. It s just t hat he has no one on LDN, he knew nothing about it, and he took h is own time to go and research.
181 Emotional health effects Many people reported that the online IBD community has helped them cope emotionally. This is to be expected, as many people reported how much they appreciate the support they get from the online IBD community, as discussed in Chapter 5: It hasn t affected the management of my disease but overall it has helped to manage the mental health aspect of life with a chronic illness. (female, ul cerative colitis, age 41) It has helped my know what might be coming my way and what to be more aware of, a lot of things that my doctor had not told me about. (female, indeterminate IBD, age 29) there s times that i am in so much pain that suicide does no t seem to bad but the women in the group i am in have different thoughts about that and have been very instrumental in me being here, and also along with my 2 fur kids. (female, Crohn s disease, age 34) Relations with doctors Many people mentioned that on line health information has helped them improve their relationship with their medical care team. This is potentially one of the best outcomes of online health information: patients becoming more informed, which then improves their relationships with their doctors, which them improves their health. One woman wrote: It has given me a crash course in gastroenterology so that I can engage more intelligently with my medical team. Generally I find with all medical personnel I need to establish that I am intellige nt and am willing to learn early so that they treat me as a person rather than a terminal ileum with a person attached. It also provides me tools for advocacy on my own behalf. For example when something is going wrong I can flag it with the medical team i n specific terms that may prompt them into action earlier. (female, Crohn s disease, age 48) One person had her own Tumblr account through which she documented her illness journey. This online journal became a medical record of sorts that she referenced i n her visits with her doctor:
182 It s good to be able to document my symptoms, I can look back in my tumblr archives and see patterns of when I was sick. I use this when seeing my doctor so I don t forget to mention anything. It has improved my doctors visits a lot. For example if I say I have had bleeding, I can point to which day instead of trying to estimate. (female, Crohn s disease, age 24) No health effects Most survey respondents answered the question about how the online IBD community has affected the management of their disease, and most of them found benefits in one of the three areas identified. A few people were honest, though, that the online IBD community has not affected the management of their disease: Apart from a couple minor things that have to do with a different autoimmune diseas e that developed where my Crohn s wounds are, the online community has not affected my management of Crohn s in any way. I ve had it since birth and have been through nearly every medicine and comp lication that can develop, so I m usually the one helping others with my experience. (female, Crohn s disease, age 21) When I asked how the online IBD community affected peoples health, the question was neutral as to what those effects could be. I did not ask How has the online community helped you in the management of your disease; I even explicitly stated that the effects could be positive or negative. Although this sample is not representative of the online community or people with IBD, it is encouraging that nobody r eported any negative health effects of something they learned in the online IBD community; mostly they reported indifferent health effects if they did not have anything positive to share. Raising A wareness O nline and O ffline As shown in Chapter 5, many pe ople in the online community are also involved with non profit organizations like the CCFA or UOAA, which have a considerable presence in the physical sphere. But several communities also raise awareness in their
183 own ways in the physical sphere. The online community that does this the most is the Great Bowel Movement. Their mission, according to their website, is simple: The Great Bowel Movement is a social awareness movement with the goals of empowering patients associated with Inflammatory Bowel Disease (IBD) including Crohn s Disease and Ulcerative Colitis, as well as J Pouch and Ostomy, to embrace their disease, be proud of their experience, and spread awareness throughout their communities. They spread awareness through T shirts designed to spark conv ersation about IBD and ostomies. Since 2010, Andrea estimates that the GBM has sold or given away more than 2,000 T shirts and sweatshirts. The shirts have a simple message: Ask me about my Crohn s disease/ulcerative colitis/J pouch/ostomy. People are en couraged to buy and wear a shirt either telling people which disease they have, or if they have had surgery, that they have an ostomy or J pouch. They also have shirts for family members and friends of people with IBD, which say, My _____ has Crohn s dise ase/ulcerative colitis and people are expected to fill in the blank with daughter, son, friend, etc. Many people with IBD have never told others about their disease. Wearing the shirt in public is a big step for many people to take. The online community , through social media platforms like Facebook, encourages one another to take the initiative to start a conversation. Andrea told one story: W e had one post one time where this girl was like, Okay, look. I m calling myself out. I got my shirt. I m too bi g of a sissy to wear it. I wear it around the house when I m cleaning. I really want to wear it outside. And she just got flooded with, You can do it! Take a friend with you. Have your speech ready! It was so cool. And then she followed up saying, Okay I did and the cashier asked me and it was just so cool. The online IBD community has reacted very positively to the shirts. The GBM s website includes many stories about people who have been inspired to wear the shirt: I was having a terrible doctor s a ppointment day until I went into a store wearing my Ask Me about My Colitis hoodie and made a new friend. The
184 clerk asked me when I entered the store if she could help me, stopped mid sentence, came running to me with open arms and said you have colitis ?! I have Crohn s! When were you diagnosed? What are you taking? I must have hugged her three times and I hate being touched. :) We ended up ex changing numbers. I m so happy. It is not just audience members who have found the shirts encouraging: many com munity leaders wear them in videos they post and in images on their websites. Lauren, for example, wrote on her blog about how she gained the courage to wear her Ask me about my colitis shirt: I m kind of embarrassed to admit that it took me a while to w ork up the nerve to buy and wear it. It s from The Great Bowel Movement, and I ve been eyeing their awesome designs for months. & Despite the fact that I jumped for joy when my shirt came in the mail on Friday, I ll admit that I was a little nervous to wea r it out to brunch. At a CCFA event? Of course. In Las Vegas, when I m running around with my Team Challenge teammates? Heck yes. But out to brunch and Target? Where I didn t have the support of a fellow IBD er if someone actually did ask me about my colit is? Oh, I was nervous. & So yesterday was a big step. I wore my shirt out in public and nobody said a thing. But that s okay. Because I m going to wear it again. And again. And someday I know someone will ask me about my colitis, and then I ll tell them. In the interest of research, I purchased a shirt, the Ask me about my J pouch one. I have worn it in public several times. The first few times I wore it, nobody asked me about my J pouch. But I could tell people were reading my shirt. Somebody at my supp ort group suggested that a J pouch might be too foreign to some people; because people do not have a frame of reference for understanding what that is, they might be shy in asking about it. We hypothesized that the Ask me about my Crohn s or Ask me abou t my colitis shirts might spark more conversation, as those words are somewhat more familiar to people (Many people have at least heard of Crohn s through drug commercials on TV).
185 When I was traveling between Florida and North Dakota, I decided to wear t he shirt through the airport as I would be exposed to a large number of strangers throughout the day. Again, many people looked at the shirt but did not comment. I did, though, get a question from a flight attendant who was serving drinks. I only had about 20 seconds to explain it to him before he moved on, but it was a start. When I got home, my friends and family were more comfortable asking about the shirt, but then again, they already knew my illness story. While the Great Bowel Movement is bringing th e online offline in a unique and intentional way, this is not the only organization raising awareness using physical products. Kelly and Maggie have also sold IBD awareness paraphernalia to continue their advocacy in the physical sphere. Kelly explained ho w she began: I started making ribbon key chains, and I went to the Crohn s and Colitis walk, and I actually sold my ribbons at like a kiosk thing at the walk. After I sold a lot, I was like, Wow, maybe ot her people would want it online. Kelly uses a pla tform called Etsy, a website that allows people who make their own products to create an online store, to sell her wares. Kelly started by making key chains, but her store now includes awareness wristbands, heating pad covers, and jars of inspirational and encouraging sayings, among other items. Kelly believes offering patients something personalized not only helps raise awareness of chronic illness, but also can support people during illness: All the things on there are all things that would either help so meone to comfort them on their rest days, or to give support to them. I think it s just so important to have things that can help comfort you even when, you know, you r medication s not working or your doctor s not calling you back. Maggie also had an Etsy shop where she sold IBD awareness bracelets she had made. Her shop was no longer active during the time of data collection because once
186 she started college she did not have as much time to devote to it. Her shop was active for 3 or 4 years, and she usuall y donated a percentage of her earnings to the CCFA. I calculated it one day and I think like over 200 of my Crohn s bracelets are out there in the world . (laughs) Yeah, it s really cool, and I occasionally see people post the pictures saying, Where can I get this bracelet? Meeting in P erson One specific way people s support experiences cross spheres is through in person meetings. The online community is diverse, comprising people all over the United States and quite frequently other countries as well. I t would seem that meeting another community member in person would be challenging, if not impossible. And yet, because the community is so large and diverse, one can very easily find somebody geographically close to them. Community leaders and audience mem bers often meet up, and those physical connections can go a long way in making people feel less alone. One audience member wrote about the benefits of in person meetings: The first time I met other people with my disease and similar experiences and attitud es, it really opened my eyes for the better. Now, when I see someone else have that I m not alone moment online, it reminds me how great it is, and how important connecting to others is. I have made some great friends through FB, or bui lt up friendships with people I ve met briefly (like if they live far away or something). (female, ulcerative colitis, age 29) Most of the community leaders had met someone in their audience at some point. When I interviewed Adam he was on a road trip across the country. D uring this trip, he met several people: We have met people that I guess I wouldn t have known them other than through the website. Adam also said that he has talked to quite a few people over the phone, which may be less personal than meeting in person, but can be far more personal than talking through email or text: There s a few people that I talk to
187 on the phone; for whatever reason, we just become more than just Internet friends or whatever. One of the most common places for people to meet is at C CFA events and fundraisers. While people s support for the CCFA varies from person to person, the non profit is a common denominator; even though not everybody has access to CCFA support groups or activities, people in populated parts of the country do. La uren, in particular, meets many people from the online community through CCFA events: Yeah, quite a few actually now, to the point where it stopp ed seeming weird to my parents w hen I say that, Oh, I m meeting this person from the I nternet. The girls, And rea and Megan from the Great Bowel Movement, I knew both online before I met them in person. & And then I ll meet people now who I ve known online but then they do Team Challenge in a different part of the country, so then I ll meet them on race weekend, w hich is nice. Michael s charity, the Crohn s Disease Warrior Patrol, focuses on matching people with IBD face to face so they can support each other. Michael uses Twitter and Pinterest to promote his warriors, telling the stories of children with IBD and sharing pictures of people wearing his T shirts. In late 2012, Michael s charity visited their first warrior in the hospital. Along for the meeting was Jeffrey from A Guy with Crohn s. Michael wrote of the experience: This picture perfectly captured how G REAT it felt today to visit with 9 year old hospital patient Damon Froeschl Tuttle who has been at Maria Ferari Children's Hospital at Westchester Medical Center (Valhalla, NY) since November 1st. & Damon is a cute, VERY resilient and kind kid whose been t hru the absolute mill in so many ways and once a few folks on Facebook were informed of his plight by Ivy Lindsay of Comfort Ostomy Covers by Ivy, it was a no brainer to band together to try and help. Perhaps the most organized and intentional meet up s are facilitated by Girls With Guts. GWG began when several women, all with their own online IBD communities, met
188 one weekend to brainstorm ways they could work together. Jackie was so inspired by the weekend, plus the time she has spent as a counselor at Camp Oasis (a CCFA sponsored summer camp for children and teens with IBD), that she wanted to replicate that face to face support experience with other women in the online IBD community: I left camp and I was like, Holy cow, this is so valuab le knowing p eople in real life. Online support networks are great, but there s something about an in person, face to face connection that is hard to explain, but it makes everything so much stronger. At first GWG was planning a big, stuffy, yucky conference, accor ding to Jackie. GWG eventually decided on doing a camp similar to Camp Oasis. I had learned through my experience that in person relationships and in person support networks I think are stronger than the people you meet online, even though, both the people on my board I met online and they are my two best friends, but th ose got stronger when we met in person. One goal of the camp, which had 36 attendees the first year, was to help women forge relationships that would last after the retreat was over. The re treat was designed around finding people that you could take away as your in person. And what I did is I actually roomed them geographically, so there were three people to a room. So I put them state by state as much as I could, to the point where, if you re having a bad day, hopefully you can call someone and maybe they can drive a couple hours and come see you. The retreat is not the only in person meeting opportunity available through GWG. The organization also has its own version of face to face suppor t groups, called Butt Buddies. Jackie explained the purpose behind the groups: Generally we ve found the term support group to have a negative vibe associated with it, and our groups are anything but negative! Butt Buddies are IBD support groups for peop le who hate support groups.
189 At the time I interviewed her, Jackie said GWG had two Butt Buddies groups, one in Fenton, Michigan and one in Dallas, Texas. At the GWG retreat, they began training for girls interested in starting their own groups. W hat I ha ve found is people with IBD don t need to be prompted. I ve found that you can put them in a room and they can talk for hours and hours and hours and you don t ever have to say, like, We ran out of stuff to talk about. Jackie mentioned, though, that th e Butt Buddies group she facilitates is not always well attended. Lots of people say they want a group, and yet when meeting night arrives, few people show up. Her attendance has ranged from 2 15 people, comparable to the support group I facilitate in Gain esville for people with IBD. While many people with IBD have met in person with individuals they have known online, these people seem to be a minority of people in the online IBD community. Almost all community leaders, who are very active in the online c ommunity, have met people. Those who are more active in the online IBD community, who not only spend a lot of time posting and consuming others content but who also make many personal connections with people in the community, tend to be those who take the next step to meet in person with those they have encountered online. Social Construction of Inflammatory Bowel Disease using New Media Technologies Patients and medical practitioners alike generally agree on the biomedical characteristics of inflammatory bowel disease as a disease, outlined in Chapter 1. Most everyone acknowledges that IBD has no known cause, and most people agree that there is no cure. The symptoms are well known: diarrhea, abdominal pain, nausea, weight loss, dehydration, bleeding, and intestinal scarring. And while not every treatment is effective for each person, most patients seem to agree that the standard
190 treatments from steroids to immunosuppressant drugs to biologic drugs are effective for at least some people. However, many peopl e with IBD are stigmatized by the disease, and often they feel like popular conceptualizations of the disease, even well meaning ones, do not reflect the reality of living with the disease. This section is focused on how IBD as a disease is constructed an d redefined by patients in online communities using new media technologies. Even though most patients and medical professionals seem to agree on the biomedical aspects of the disease, IBD also carries with it a lot of social connotations. People in the onl ine IBD community use new media technology to make the disease more socially acceptable or to reduce the stigma associated with the disease. Patients and non patients often have differing views on how the disease affects an individual s day to day life, an d some patients believe these differing views can be hurtful. Many in the IBD community have learned to use new media technologies to shape perceptions of IBD, not only for outsiders, but for others with the disease. In this section I will discuss five sp ecific ways people with IBD use new media technology to redefine the disease: t he refiguring of the body is beautiful ; i nflammatory bowel disease is serious and deadly ; i nflammatory bowel disease is humorous ; t he disease makes one stronger ; and t he disease is invisible, but needs to be made visible . The online community is not always in agreement, though, about how the disease should be redefined. Multiple redefinitions of the disease can compete, which can cause conflict among IBD community members. The R e figuring of the B ody is B eautiful At first glance, it can seem that people in the online IBD community are obsessed with appearances. Some platforms, especially Facebook, are populated with people
191 who post photos of themselves: photos while they are in th e hospital; photos while they are at home administering injections or treatments; photos in bathing suits; and photos of scars and ostomies. Some community leaders like Maggie and Kelly post beauty and make up videos. The intense focus on beauty in many of these communities is not a superficial conceit. These people are reacting against the stigma they face because of the way the disease alters their appearance in ways that are socially less desirable. Some people lose significant weight while in a flare; o thers gain a lot of weight due to side effects of medication like prednisone. Some people have small, neat, non obtrusive scars, yet others have large, deep and messy scars caused by emergency surgeries. Ostomies are gross and disgusting for many people: h aving waste attached to a bag outside the body is not natural. So individuals often post photos as a reaction against a definition of IBD that says IBD makes a person less attractive. This common sentiment was expressed by one blogger on Girls With Guts: IBD is not genenerally considered a sexy disease. People don t want to talk about how many times a day they poop, the consistency of their poop, or the amount of blood in said poop. Mostly, cause it s not sexy. It s not empowering. It s private, and socie ty tells us, it s embarrasssing. The redefinition, then, is this: people with IBD are beautiful, and re figurings of the body are also beautiful. The re figurings of the body, such as scars and ostomies, are not blemishes that have to be ignored. People w ho have had their body re figured by surgery are not beautiful despite the scars or ostomies. Rather, the scar or ostomy itself can be beautiful for what it represents. Jackie has mentioned several times on Girls With Guts, Blood, Poop & Tears, and her Yo uTube channel that she often struggled with her weight gain due to IBD:
192 Before I got sick, I was an athlete. I played soccer. I was a runner. I was proud of my body. But years of steroids have left my abdomen covered in stretch marks and dozens of scars fr om incisions. For years I refused to show my stomach to anyone. I was disgusted by it. But over the past few years I ve learned to accept my body. I ve learned that all of these scars make me who I am. I am proud to share my story. Jackie posted a series of videos and blog entries about her decision to have plastic surgery to reform her stomach so that the scars were less visible and the loose skin left over from weight loss would be less noticeable. While the disease itself reformed her body in ways she c ould not initially accept, she eventually chose to reform her body in a way that made her happier. G irls With Guts features many stories of women who came to accept their beauty. One woman wrote: One of the things I was looking forward to when I had my st oma closed up was having a hot body again. I ll admit I was always a bit vain about it before the stoma and liked to show it off and I was looking forward to doing that again. So I was surprised and disappointed after the take down about how I felt about m y scars, which cover most of my tummy, one of my best features before surgery. I couldn t get over how ugly I found them. She wrote about how she posted a photo of herself in lingerie, scars and all, on reddit.com. She wondered how people would react to h er and anticipated that guys would say the rest of me still looked hot and the scars weren t that bad. What she received, though, was a very different response. People did find her attractive, but they also found her scars attractive: not physically, bu t because of what they say about me. Audience members usually respond very favorably when people post images of themselves or talk about their beauty: After the first surgery, my confidence took a weird turn. I was thinner and felt more like myself after I was able to stop taking Presnisone. I dropped probably forty pounds, got a sexy new wardrobe and strutted my ass around campus. Boys started flirting with me again, and I even forgot about the bag I had glued to my abdomen to catch my feces.
193 Jeffrey al so used new media technology to spread the message of beauty. On World IBD Day 2013 he posted a video showing what Crohn s and ulcerative colitis look like. This video was in part a response to the CCFA Escape the Stall campaign (which will be discussed la ter in this chapter), but the point of the video was to show what life is like for people with the disease. Audience members submitted pictures of themselves in the hospital, of IVs, and of scars and ostomies. These pictures were shown in a slideshow; the background music was Christina Aguilera s famous song Beautiful, which says, in part, You are beautiful no matter what they say / Words can t bring you down. Conflict in the community regarding redefinitions of beauty While the community is very suppo rtive of those who tell their stories and post pictures of themselves, not all of those who make themselves vulnerable through public postings experience positive responses. One woman told a saddening story about stigma she faced in the IBD community over her photos. She had been inspired by other young women who posted photos of themselves online and met with a photographer friend to do a photo shoot. She took pictures of herself showing off her ostomy bag, some more revealing than others. She was nervous, and taking the photos was a big step for her: I m not young and beautiful like the Girls With Guts, Jess Grossman, or Alison. I am also quite camera shy; I don t take photos well! She posted the photos to numerous IBD groups on Facebook. While the posi tive response was overwhelming, it was not universal. She wrote: But then 1 group totally shattered me! It was an IBD group. I was told I looked hideous, that my face was enough to scare anyone, let alone my bag, and then the comments came that I was horri fic and that my photos were enough to scare anyone out of having surgery. This hurt the most as my whole reason for doing the shoot was to help people not scare them!
194 Occasionally audience members expressed jealousy toward one another when somebody posted a photo. This seems to be more common among women regarding the issue of weight. As mentioned, IBD can either cause drastic weight loss or substantial weight gain. People react to medicine differently. Prednisone, for instance, can increase hunger and flu id retention. Because prednisone is commonly used when people have serious flare ups, a person who initially had lost substantial weight because of the flare up might quickly gain back that weight, plus more. However, not everyone has this experience. When a young, thin girl posts a photo of herself online showing off her scars or surgery, she will often get compliments from others, but a few women will say something like, I wish I looked that good or I wish I was as thin as you. Most everybody seems to affirm that weight lost due to IBD, while it might have a beneficial side effect of making one thinner and more desirable, is not lost in a healthy manner. As mentioned before, these communities are predominantly run by women and populated with women, ev en though the disease affects both sexes in nearly equal amounts. Because of the dominance of women in this community, male voices are less prevalent, and photos of males showing off their ostomies or scars are even less prominent. Jason, the co founder of Awestomy, posted a photo of himself on Facebook, shirtless, showing his ostomy. The caption read: 15 years Crohn s battler; 6 month ostomate. I show my S.C.A.R. with pride. Strength. Courage. Attitude. Resilience. He got many compliments and a 100% fav orable response. But that does not always happen. On the Ostomy Outdoors Facebook page, for instance, a man once posted a photo of himself shirtless, showing his ostomy. There were no comments or
195 likes. He posted a couple times later that day, and two peop le thanked him for sharing the photo, but there were no comments in the form of You are so beautiful as are frequently seen on female photos. Some men do long for other men with IBD to be more open. On a Girls With Guts blog post about beauty, one male commenter wrote: Completely agree with what you re doing here. But men have the same, if not worse, problems with body image after surgery. You should make one of these sites for guys too. The poster, a woman, responded in part: We started this site be cause the majority of people who come to us are female and they seem to be the ones who are usually talking about this stuff, the guys seem to be more quiet. I d love to see more guys being open about their feelings and talking too. This redefinition of IBD, that refiguring of the body is beautiful, definitely is advocated by women and directed at women far more often than men. Women seem to have embraced the technology of sharing stories and posting photos, and the more prevalent these photos become, the stronger the redefinition. Ostomies are gross, and the Right 2 Remain Sexy In July 2013, a Cincinnati, Ohio, television station broke a story that unintentionally offended ostomates in the online community, illustrating how the wider public often perceiv es ostomies, and how this ill formed perception (in the eyes of many ostomates) is an impetus for redefining people with ostomies as beautiful. WCPO reported that the Cincinnati police department was launching a new outreach campaign intended to reduce the rate of juvenile shooting victims. The news story read, in part (emphasis added):
196 Cincinnati District 3 police are taking unusual steps to try to stop the 200 percent increase in juvenile shooting victims over the last five years. They re hoping pictures of gunshot survivors who are paralyzed or require a colostomy bag will make some at risk teens think about their lifestyle. With the help of probation officers, juveniles involved in drugs and gangs will be invited or forced by court order to attend a large meeting at Oyler School in Lower Price Hill. The first of its kind Youth Initiative in District 3 will appeal to the vanity of teenage boys living a life of drugs and crime. Lt. Joe Richardson said the teens will see gruesome photos of gunshot surviv ors from the University of Cincinnati Medical Center. You re not killed, but you re walking around with a colostomy bag and that s just not the way to get a girl s attention by limping down Warsaw Avenue with a colostomy bag, said Richardson. (Warren, 20 13a) People with ostomies were upset that ostomies were being used as something to gross out teenagers. Jason noticed the story being spread in groups online. He wanted to redefine the terms of the campaign, changing it from people with ostomies are gr oss to people with ostomies are sexy. He wrote in part on his blog: Our brainstorming process usually starts with some of the most ridiculous names. We wanted to weave in something ostomy related with a police theme but with humor which is common here at Awestomy. Usually it just ends up in giggling. Some of the names we came up with were #stopinthenameofstoma, #showyourmalewhaletale, #pouchesandparkingtickets. We landed on #right2remainsexy because we felt it applied and otherwise would be something a police stripper would say to a client. As we posted the contest, we thought that we d see some of our continual supporting fans, with maybe a few new faces but we knew immediately that something had struck a chord with this. After a post from Katie was pla ced immediately after we posted, we began to understand that the ostomy community had had enough of the stigma and we re finally ready to come out in droves.
197 They used the hashtag #right2remainsexy on Twitter and asked people to submit photos of themselve s with their ostomies. Within days, audience members had posted more than 50 photos on Facebook, many of people in swimsuits or minimal clothing showing off their ostomies. The majority of submitters were young, thin women, but all body types and both gend ers were represented. By the end of the submission period, more than 100 people had submitted photos. The photos were arranged in a collage and used as the cover photo of Awestomy s Facebook group. The #right2remainsexy campaign was a community driven exam ple of individuals using social media technology to combat stigma and redefine people with ostomies as beautiful and sexy. Jason wrote of the success of the campaign: This cont est has NEVER been about the [Cincinnati Police Department] , it s been about YOU . If I could, I would actually like to thank Lt. Joe Richardson in his attempt to reduce juvenile shootings & crime. YES, YOU READ THAT RIGHT. Without his oversight and mis education, this campaign would never have come together. We wouldn t have seen the public outpour of support and incredible photos of people who want to tell their ostomy story. In early August, the Cincinnati police responded to the public outrage over the campaign. A follow up news story read in part: Roughly three weeks after the st ory ran on 9 On Your Side and WCPO.com, an ostomate in Canada spotted it while surfing the Internet and shared it with the ostomy community. That community, angered by the remarks, launched a phone and email campaign that had an international reach. Rothba um [a Cincinnati woman with an ileostomy] said the topic outraged people around the world, including many who had never heard of Cincinnati prior to reading about the controversy via various forms of social media. We have received comments, website hits , signatures and more from far and wide. This touched an international spectrum, and international outrage. Countries that wouldn t even know where Cincinnati was located, now have heard of us in a way that we re working to rectify. (Warren, 2013b)
198 The C incinnati interim police chief, Paul Humphrios, eventually apologized, saying: I am very sorry this happened and will work to ensure it does not happen in the future. I assure you this was a mistake on the part of well meaning individuals and not a deliber ate attempt to offend anyone. (WCPO, 2013) In August, the apology was read during the closing ceremony of the UOAA National Conference and was met with a standing ovation (Warren, 2013b). People in the online community responded to the Cincinnati police d epartment on Twitter with the hashtag #OstomyIsNotATragedy. What is interesting about this entire episode is that it sometimes does not take much to get people in an online community excited, and likewise, it does not take much criticism to raise awareness or effect change. The ostomy community s anti stigma hashtags were used primarily between July 31 and August 7, 2013: #OstomyIsNotATragedy was used more than 70 times and #right2remainsexy was used more than 50 times. Inflammatory B owel D isease is S erious and D eadly People with inflammatory bowel disease find themselves in a conundrum. The disease is not as well known as other medical conditions, so people try to explain it in simple terms. Most people can relate to the common symptoms: everybody has had diarrhea at some point. Everybody has had a stomach ache. Everybody has been nauseated. When IBD is examined symptom by symptom, it seems that it should be easy for people to relate. Unfortunately, what outsiders often have a hard time grasping is that, w hile IBD might be very manageable if people only had to deal with one of these symptoms or if the symptoms occurred short term, they often struggle with many symptoms at once for long periods of time. People with IBD often talk about how others in their li ves do not
199 get the disease, and they want that to change. They want to redefine the disease as a serious, dangerous, and even deadly disease. Many audience members wrote about the challenge of expressing the seriousness of the disease to others: I have a lot of people without IBD tell me that it isn t that bad, and it can t be any worse than having the flu... that gets very frustrating to hear. (female, indeterminate IBD, age 29) It gets confused with IBS a lot and made to seem lik e a tummy ache. People also don t understand that it affects the entire body, they are surprised when they hear about joint pain or other extra intestinal symptoms. (female, Crohn s disease, age 24) Some in the online IBD community have started comparing the disease to better k nown health conditions. Jackie said (emphasis added): I think that when you can convey the actual severity of it, when you can say, People die from this , people finally understand it. I mean, I have friends that have lost their lives due to complications from Crohn s disease and ulcerative colitis. And it s heartbreaking because they re all really young because of it. And it s one of those things where people don t know that. & H ow I try to explain it, which makes & it s a controversial way, is to compare i t to cancer in that we share drugs. We have people who die . There is a perception in the online IBD community that cancer is better understood than IBD: there is more awareness raising for cancer; there are more fundraising events for cancer; and there ar e more vocal people in the media who talk about cancer. By comparing IBD to cancer, then, they hope to appropriate existing thoughts people may have about cancer and apply them to people with IBD. Outsiders know that cancer is serious, expensive, painful, debilitating, and can be deadly. If outsiders understand that, then perhaps the comparison will help them understand the seriousness of IBD as well.
200 Some might think the emphasis on deadly is overblown and reactive because, although people can die from complications arising from IBD, they do not die nearly as frequently as people with illnesses like cancer. Still, when somebody dies, it can be shocking for people in the community. In October 2013, a young woman died from complications of IBD. Jeffrey pos ted on his blog a memorial in her honor, saying in part: This week I learned again just how dangerous IBD can be. This week we lost another warrior in the battle against Crohn s Disease. Karrie Jacobs, mother of 2 little kids and a wife to a loving husb and, died from complications of the disease. I don t know the whole story but it is being said that she had some issues with strictures and was having trouble breathing. She called 9 1 1 and by the time the paramedics got there, she had stopped breathing and had pasted on. I got to know Karrie from a IBD group on Facebook. She was very kind to others and had a great heart. I wasn t aware she had some issues go on so this was a big shock to me as well as everyone else. But is also shows just how deadly these invisible illnesses can be. IBD is more than a pooping disease The symptom that seems to get the most publicity is abnormal bowel movements. While most patients have problems with diarrhea, a minority of people have the opposite problem: constipatio n. In trying to express the seriousness of the disease, people in the online IBD community avoid talking about poop and want to refocus on the systemic effects of IBD on the body: IBD, by many, is seen as a pooping disease. I am quick to remind people th at it is SO MUCH more than that. (female, Crohn s disease, age 20) It s very hard to have Crohn s disease because most people don t understand how serious it is. When I say I have Cr ohn s disease, most people say oh so you go to the bathroom a lot which isn t even one of my symptoms. (female, Crohn s disease, age 30) Jackie said that when she was first diagnosed, she tried hard not to tell anybody else about the disease:
201 I only knew one person in the whole world, who I still really didn t talk to, who h ad colitis, and all that I knew was that it meant, like, poop. That s all that I knew. I felt like, I f that s all I knew, that s all everybody else knows. So if I tell people, they re just going to think about me and my butt and pooping. And I was like, I can t do that. I can t talk about that. Girls don t poop. I can t talk about that. I was just humiliated. Some people with IBD try to put it in perspective: the bowels can be gross, but everybody poops, so talking about bowels should not be taboo. And rea from The Great Bowel Movement often gets told that she talks too much about the disease. But she responds to them: Well, I just don t view it as gross. You can. You re fully entitled. There s a majority of people out there who think it s gross. I got it. But it s also functional. T he body s getting rid of waste. At the end of the d ay, that s all there is to it! Criticism of the CCFA s Escape the Stall campaign In early January 2013, the CCFA launched a new awareness campaign called Escape the Stal l. The campaign featured print ads and a 30 second public service announcement, which the CCFA hoped would air on television and before movies (Newman, 2013). Actress Amy Brenneman, who has appeared in the television shows Private Practice , NYPD Blue , and Judging Amy , has ulcerative colitis and appeared in the ads. The ads consisted of a series of bathroom stall doors. Underneath the door a pair of feet could be seen, along with a caption. One ad, for instance, showed Santa Claus s boots, saying IBD doesn t care if you ve been naughty or nice. Another ad showed a woman s feet and wedding dress, saying IBD gave her a day she ll never forget. The ads then included, in small print at the bottom, a few facts about IBD. The ads also directed people to the CC FA s website. Reaction to the ads was swift and opinionated among the IBD community. Many people were extremely offended by the ads, saying that the CCFA had resorted to using
202 toilet humor to discuss a very serious illness. Others said that the CCFA, by f ocusing only on the bathroom stall door, reinforced the regressive notion that IBD is just a pooping disease. Jeffrey from A Guy with Crohn s wrote on his blog: & at first it didn t bother me. I admit I have used bathroom humor in the past as I have a pa ge on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope. Over the past year I have learned so much about IBD. Crohn s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illne ss, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that th e CCFA ads are not a good idea. He went on to explain all the side effects of living with IBD, making comparisons between living with IBD and cancer: When people put out ads for cancer we see b ald people hooked up to chemo. When there are ads for emphysem a we see broken down peo ple hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and ju st looking horrible. So where is our graphic ads? Michael from Hospital Patient was also disgusted with the ad campaign. He w rote on his blog (emphasis in original): CCFA has AGAIN failed MISERABLY in trying to help us Crohnies and IBDers by yet again putting the focus of their well intended efforts on a BATHROOM STALL DOOR and using PITY to play directly into the public s overa ll perception of the less serious stigmatizing aspects of these chronic, incurable, autoimmune and often VERY painful diseases which can, and do, DESTROY lives (and families) physically, mentally, psychologically, financially, professionally and socially . Comments on these posts showed that many people in the online IBD community agreed that the CCFA had gone too far with this campaign:
203 The ads are stupid. All they are going to convey to normies is that IBD equals shitting. That s what most think of it a nyway (if they think of it at all). How do you think this is progressive or risky? This is just using the same old tropes it doesn t convey anything about the horror of IBD (which you addressed) but nor does it generate any sympathy. A sizeable portion of the online IBD community, however, gave a more measured response, expressing some disappointment with the ads, but overall supporting the CCFA in general and the ad campaign in particular. Lauren offered a unique perspective in that she not only has IBD and maintains her own community, but she also works for the CCFA. She said: People tend to really hate the awareness campaign that we released last year, the Escape the Stall campaign. I don t work in marketing, so I had nothing to do with the campaign. W hile I understand, I understand the concern. When I first saw it, I was like, Are you kidding me? Bathroom? Everybody thinks our disease is only the bathroom and it s not just the bathroom. But, you know I work there, so I was privy to like, the rollout internally , and I got to listen to the reasoning behind it and really like understand it, and, you know, came to appreciate it. Lauren explained that many in the IBD community criticize the CCFA as having no employees who have IBD and as being out of touc h with patients or their needs. Lauren responded: Which is absurd because I have Crohn s and I work here and I have a lot of friends who are patients who work at the foundation. So it doesn t make any sense to me. There are those, not everybody at the foun dation, obviously, has Crohn s disease. It would be absurd. But there are some of us who do, and we do get it because we live it. Other community leaders supported the campaign as well. The Great Bowel Movement expressed support, arguing that no one ad ca mpaign can contain all aspects of IBD as some in the community would prefer (emphasis in original): The more an ad campaign such as this tries to encompass the complexities of life with IBD, we feel the less effective it will become. Complicating the camp aign or trying to say too much at once will diminish the blunt and poignant message. &
204 The bottom line, we feel, is that this campaign does NOT sum up the complete IBD experience. But it s not supposed to, and it s not trying to. It s simply trying to get attention, and then it s OUR job to tell those around us that yes, we use the bathroom a lot, but we also experience pain, fatigue, hospital visits, surgeries, and emotional pain. This episode illustrates several ways in which the online IBD community wo rks to redefine the disease. On the one hand, people want IBD to be taken seriously. People want to erase the stigma that IBD is gross. They want people to know IBD is serious like cancer, is deadly, and is more than a pooping disease. Some of these people have been using social media technology for years to share stories and explain what living with the disease is really like. Consequently, some people thought all that work was undone by the CCFA s Escape the Stall campaign, that the CCFA was trying to def ine the disease as a pooping disease and as something that should be laughed at. Some in the community responded harshly to the CCFA as a way of correcting what they saw as misconceptions of what it meant to live with the disease. Others, though, thought t he CCFA s message was on target, that the message did not redefine the disease in regressive ways. Inflammatory B owel D isease is H umorous This section focuses on another redefinition of IBD at play in the online community, one that, in many ways, is the a ntithesis to the previous redefinition, that IBD is a serious disease. Humor is used quite frequently in the online IBD community, usually in the form of images with a humorous caption, but sometimes in the form of text stories and rarely in the form of vi deo. Social media platforms like Facebook, Pinterest, and Twitter are perfect for sharing images: people can look at images quickly while scrolling through a feed. Images are easy to share and repost between social media platforms, and quite frequently, so mebody who posts a humorous image on his or her
205 Facebook page will find that image shared on other Facebook pages, or humorous picture tweets will be retweeted. Most of the humor could be classified as crass bodily humor poop jokes, fart jokes, and toilet jokes. But occasionally the humor concerns experiences with the doctor, medical procedures, symptoms of the disease, or even the way outsiders react to people with IBD. Awestomy makes a point to create and share humorous images on its social media platfor ms. Once the community made a series of bowel related Valentine s Day cards. One showed a red enema bottle and rose and the caption read, So happy you re enema life! Another popular image that was shared on many sites was an empty pill bottle with a litt le three legged stool inside. The label on the bottle read Stool Sample. Another image was a black and white illustration of a man and woman dressed up, gazing into each other s eyes, with a caption reading Love is like a fart. If you have to force it, it is probably shit. On my own Facebook page for UCVlog, my partner Nadia often shared humorous images. Around Christmas she shared a photo of a sad Santa Claus, with a caption reading, Someone s cookies gave me the shits. For Halloween one year, Nadia and I shared photos of two pumpkins we carved. My pumpkin had a strained face as he barfed out his insides (all the pumpkin fibers and seeds). I also carved him a butt, and he had explosive pumpkin fiber diarrhea. Nadia s pumpkin had a clear ostomy bag fi lled with candy corn stool. Kelly has made a few humorous videos about life with IBD. In one, Things I Do At Night she shows all the random things she does at night while struggling to fall asleep: texting friends, surfing the Internet, watching TV, t aking medicine, reading. In
206 another video, IBD/Chronic Illness Workout (silly) she shows what a workout for people with illness might look like: lifting a basket of pills, sprinting to the bathroom, twisting off pill bottles. She s gotten some supporti ve comments on these videos, including one reading: Thanks for sharing this! I m 15 years post op J pouch Ulcerative Colit is. Still sucks but no more pain and disease. I can relate to your video. I laughed. Thanks again! Humor is a big part of these communities, but interpreting the meaning of humor is challenging. Humor can be a coping mechanism or a way to relieve stress and can be viewed as another expression of emotional support. The widespread use of humor, however, also suggests that people are using humor, at least in part, to redefine IBD as a disease. This redefinition might be phrased: It is okay to laugh at IBD a nd the medical institution; it is okay to laugh at the things people go through with IBD. The community seems split on the use and appropriateness of humor. People want the disease to be taken seriously, to be seen as more than a pooping disease. Yet some people also want to laugh at the disease. Humor has a way of lessening the power of the disease. Jason talked extensively about why Awestomy uses humor so much on social media. W e think we re funny. We may not always be funny, but we like to put stuff o ut there that gets responses. Jason explained that humor is really about erasing the stigma associated with the disease. All of these redefinitions of IBD are, at least in part, about challenging stereotypes and stigmas about the disease: I felt like bein g positive people, I felt like we could put a good spin on it. Be more positive. Be humorous, which I think people appreciate. I think if you have an ostomy it s, sometimes you ve gotta laugh at yourself for some of the things you go through. To have that sense of humor and to try to really flip what I f eel is a negative stigma.
207 Jason s community tries to do more serious posts from time to time, but he admits that the serious material sometimes does not get as much attention: T he social media world is pret ty funny because you spend a lot of time trying to write a thought provoking blog post, or a medically related blog post, and that doesn t get as much of a response as p utting a dumb picture out there or a picture related to ostomies. I think at this point , we ve probably exhausted every joke that could be made about an ostomy. And audience members seem to appreciate the humor. When asked what they like or enjoy about the online community, humor was a common thread in many of the responses. One woman, Croh n s disease, age 21 wrote: Tips how to deal with an IBD but also the jokes only IBDers can understand. The humorousness of humor, though, depends on the source. While people may accept poop jokes coming from other people with IBD or ostomies, they often will not accept or appreciate humor coming from outsiders, people without the disease. Some audience members told stories about people in their lives tried making jokes about the disease, but the jokes stigmatized them. One woman with Crohn s disease, age 21, said, I have people made rude comments and jokes about it, it has heightened my shame and embarrassment. Another woman, age 29 with ulcerative colitis, told a particularly illuminating story about how humor from outsiders can backfire: For example, one of my college roommates once passed gas very loudly in our room, and then laughed and said, I fi gured that s ok, since you have colitis! I was offended because I did NOT think that was ok. I had never joked about my disease, had never passed gas in front of her, and if I ever did, it would have been by accident and I would have immediately excused myself and apologized profusely. I resented the fact that she seemed to equate, has a digestive disease with enjoys bathroom humor. Jessica, co fo under of Awestomy, discussed in a blog post that ostomies are often used in a humorous but offensive way by outsiders, who she termed The
20 8 Uneducated. When searching Twitter for the hashtag #colostomy, she found quite a few tweets by these uneducated th at referenced colostomies in an insensitive way. One tweet read: Saying you re an Internet Celebrity is like saying you re an Award Winning Colostomy Bag. She compared the insensitivity of this humor to joking about other serious medical conditions, which she thought are not acceptable to make fun of in this way. Jessica wrote: Does this make my blood boil, you bet your ass. People would never talk this way about a mastectomy, chemo or any other life saving procedure in this manner. It s things like t his that make me realize how important education, raising awareness and supporting bowel related non profits truly is. As far as education and acceptance goes about ostomies, we have a long road to hoe. Lauren from Forward is a Pace wrote a blog post abo ut attending a Take Steps event in Chicago, a fundraiser for the CCFA. She wrote how many of the team names were poop jokes; many of them had T shirts with the team name emblazoned on the front. She understood why people do this: Poop jokes seem to be a t hing in the IBD community, and I get that. When you have a disease that can send you to the bathroom ten, twenty, even thirty times in one day, you have plenty of time to think of those puns. Laughter is the best medicine. I get all of that. If you like t hem, more power to you. She went onto explain, however, that IBD is so much more than a pooping disease, and the excessive focus on poop humor sends the wrong message about the disease. In other words, the use of humor redefines the disease in a damaging way: Sure, some of them are funny. Many of them are clever. I just think they miss the point and lead to people becoming even more misinformed. When I explain IBD to people without the disease, one of the most difficult thing s to convey is the seriousness. Some audience members agreed that IBD humor can go too far. One blog commenter wrote:
209 I don t find them funny, either. I think it s just crass and tacky. It s not funny when it s your life for so many years, and also the nature of poop jokes and it being such a social taboo made me so ashamed of myself at first. I didn t want to talk about it because I knew potty humor would prevail and no one would take me seriously. Cancer, diabetes, these things don t get laughed at. Well, my UC almost killed me yet pe ople still make fart noises. It s immature, classless, and disrespectful. Grow up. The D isease M akes O ne S tronger Inflammatory bowel disease can be physically debilitating. In many ways, the disease makes people vulnerable, damaging the immune system, whi ch can be further weakened by drugs. Poor absorption of nutrition makes people tire easily. Frequent bowel movements can cause some long nights. While people in the online community acknowledge and often accept physical limitations, some do not want to say that the disease makes them weak. Many audience members said they have experienced people perceiving them as weak because of their disease. One woman, Crohn s disease, age 50 wrote: People think you are weak or that you did something to cause it. In ma ny physical ways the disease weakens the body, but paradoxically, the disease can also strengthen a person s spirit. In this redefinition of the disease, many people believe that the strength they have gained through fighting the disease outweighs and over comes any physical limitations imposed by the disease. Some people talk about IBD and the process of treatment as a journey, a difficult journey to becoming better, not just physically, but becoming better as a person. Kelly, for instance, often refers to her audience as strong fighters. I ended almost every one of my 600 700 posts on UCVlog with Keep fighting. Some in the online community note that we cannot control the disease, but we can control our attitude and behavior toward others. For the dise ase to make people
210 stronger, they have to make conscious choices every day to fight back, to resist feeling sorry for themselves. Awestomy s Pinterest account includes several boards devoted to inspirational sayings, many of which reinforce the idea that p eople with ostomies are strong; usually they contain a reference to bowels. Many of these images are re pinned from other Pinterest accounts, so the bowel references probably were not originally intended to be taken literally. But when people in the bowel disease community appropriate these sayings, they take on new meaning. A sampling of such sayings includes (emphasis in original): Quit slackin and make shit happen Good things come to those who wait Good things come to those who work their asses off and n ever give up Shitty situations inspire brilliant solutions One audience member (female, ulcerative colitis, age 36) said: I don t wish this [disease] upon anyone. It has given me strength and reason to fight harder and keep forging ahead for all that I w ant to accomplish without letting this get in my way! Several people also used participation in sports as a metaphor for overcoming their illness. Being able to do something after being sick for so long is not only a physical accomplishment, but a mental one as well. It normalizes life and demonstrates that the disease does not have to hold a person back. One young woman who took part in Team Challenge, the CCFA s half marathon fundraising event, wrote of the experience: I could never have known how seam less a metaphor this race would end up being for my journey with Crohn s. Only in the aftermath of the Team Challenge experience did I come to realize the similarities between the two, and the real purpose behind the program. It was never about running or walking. It was about getting my guts back, so to speak, in order to weather the storm.
211 Stephanie of Stolen Colon also started running post surgery, participating in CCFA Team Challenge half marathons. She explained why she started running (emphasis ad ded): W hen I went to college I had wanted to start running more and stuff like that, but getting sick just sort of kept me from ever keeping that up. I would get into it for a few weeks and then fall out of it every now and then. And so then especially lik e the last few years, right before my surgery, I was just never able to. I had an issue with keeping things in if I tried to run, so I gave up on that idea. And so that was one of the first things after I had my surgery and I was feeling good, I was like, I wanna do a race or something because I ve never been able to do that. Heidi s Ostomy Outdoors community is almost entirely focused on showing her comeback from illness through the lens of physical feats like snowboarding, rock climbing, hiking, and mo untain climbing. One of Heidi s impetuses for starting her community was to inspire people that they can still live a fulfilling life with an ostomy: I & didn t see that there was a lot of talk out there about doing outdoor sports with an ostomy. That was something I was really looking for when I was facing my ostomy surgery. The idea was sparked for Ostomy Outdoors, sort of as a niche, like, Oh yeah, that s something I can talk about that s a little different, and hopefully inspire people who enjoy thos e sorts of things. All this talk about finding strength and hope and fighting the disease can be problematic for audience members who are having a hard time with the disease, undergoing intense suffering with no end in sight. In these situations, when the y feel very weak and perhaps even useless, this sort of inspiring talk can be demotivating because the gap is so great between how they currently feel and how they would like to feel. One woman, Crohn s disease, age 24, wrote: I can t stand it when people act like life with a chronic illness is awesome all the time and imply that if you re having a hard time, it s your own darn fault. Those people are scattered throughout the communities I participate in, and I don t view them as credible. I like people who are honest about their experiences and are willing to share their coping mechanisms.
212 Another competing set of ideas in the online community is whether or not the disease defines a person. Some people think being defined by a disease puts them in a weaker position because it means the disease has control over the person s life. Strong people, then, are not defined by the disease. One audience member wrote: I do n t let my disease define me. While it has shaped me to become who I am today, my disease is no t my identity (female, indeterminate IBD, age 20). Sometimes, though, people will say that they are defined by the disease. In this use of the word, a person who is defined by the disease has power over the disease. They use the disease to their advanta ge. The disease does not hold them back. Andrea from The Great Bowel Movement said that she actively embraces being defined by the disease: I have this thing [IBD] now, s omething everybody associates me with. Everybody knows that about me. They refer frien ds to me the second somebody goes to the bathroom more than three times. T hey re like, Oh, you should really talk to Andrea. Maybe you have IBD. And I m gonna be like, Or, maybe they just had Hooters. Relax. But it s fun that there s that association. I want that. A similar sentiment is expressed on the homepage of The Great Bowel Movement. An image featuring people wearing the Great Bowel Movement T shirts includes the following inspiration (emphasis added): Just because you are affected by Crohn s Di sease or Colitis doesn t mean you have to hide it. Sure, your disease may cause you pain, and embarrassing situations, but you deal with it, and that s something to be proud of. That s worth sharing. You are stronger than you were, you re resilient because of this, you can handle more than you ever thought you could. And even in your moments of weakness and pain, just by dealing, you are accomplishing more than an average person on an average day. You are an inspiration. So talk about it. You don t have to be ashamed. You re allowed to share details, you re allowed to make jokes. It has become a part of you, and that s ok.
213 This idea that being defined by the disease, and in turn, being made stronger by the disease, is one that I personally hold. Four years ago I made a video entitled I am Defined by Ulcerative Colitis in which I said that even though the disease is bad in many ways, it has shaped who I am and allowed me to meet so many people I never would have met otherwise. I did not get many responses t o this video, but a few comments included: This video really meant a lot to me. The benefits you mentioned are exactly the benefits I have gained from this illness. It is hard though. For me, the worst part isnt the health aspects, but more the alienation from my friends. I ve seen several comments about how UC has changed their life socially. I m really sad to hear it, but know where you are coming from. Thank you for talking about this issue! so so TRUE! Not my most commented or viewed video, not by far. Perhaps in some way I, too, was one of those people in the online community who talked so positively about the disease that I minimized the experiences of those who did not feel stronger because of the disease, who did not feel like the disease had a net positive effect on their life. The D isease is I nvisible, but N eeds to be M ade V isible People in the IBD community generally consider inflammatory bowel disease an invisible illness because the outwardly physical manifestations of the disease are minimal : most of the disease activity happens inside the body. Outsiders cannot see that a person s stomach hurts, or that his bowels are scarred, or that she is nauseated. Of course, IBD is not the only invisible illness; diseases like arthritis, diabetes, or an y mental illness would also be considered invisible. A visible illness, in contrast, is something that people can see just by looking at another. People in wheelchairs, amputees, or people with a bodily deformity all have visible health conditions.
214 IBD, t hough, is not completely invisible. It can be made visible when a person complains of his or her symptoms, is seen going to the bathroom frequently, or has an accident in public. But people with IBD, as I can personally attest to, often get better at hidin g their disease the longer they have it. Kelly has posted extensively on her Tumblr about the struggles of living with an invisible illness. In one post she wrote (emphasis in original): The outside world around us can only see what we choose to show them, and of course we don t show them everything. This is particularly true when it comes to being chronically ill. Many may think that they know your sickness and your situation, inside and out, only they don t. They have no clue. & We put up a guard from th e outside world because what we go through is not pleasant. We don t like others worrying about us and giving us pity. All we want is to do our best and have support. The outside world will never come close to understanding the DEPTH of how chronic illness es take a toll on us. People with IBD often talk about how misunderstood they are. People try to relate to what they are going through, try to understand, but while some are more supportive than others, many people lament not being understood. One audien ce members wrote: It is hard to explain that I am literally ALWAY S sick to some people. They don t understand that I might always feel sick aft er I eat and just because I wasn t feeling well last week doesn t guarantee that I will be fine this week. People don t realize I need constant support. (female, Crohn s disease, age 21) Because the illness is invisible and people are fearful about talking about it, many people find that once they do start talking, they discover that others they know also have IBD. Jason talked about how when a person is first diagnosed with the disease, it seems as if s/he does not know anybody else with it. Once the individual starts talking about it, however, s/he may uncover direct or indirect connections to quite a few people
215 wi th the disease. I had a similar experience when I was first diagnosed with the disease. At the time, I had never heard of ulcerative colitis or any bowel disease. Yet once I started telling people about it, I found that friends or coworkers already knew ab out the disease: they had a friend or a parent or a brother or a cousin with the disease. Raising awareness for the disease, fundraising for the CCFA, sharing photos of surgery scars or ostomies, and sharing stories online, all of these uses of social med ia technology are ways people in the online IBD community try to make the disease visible. They want people to know about the disease, want them to know that the disease is serious, and want them to know that people with the disease are still beautiful. Al l of the previous redefinitions of the disease, then, all fall under this general redefinition: IBD is an invisible illness, but IBD should be visible so people understand the seriousness of the disease. Andrea wants very much for people to be more open a bout having IBD. She said: The other th ing we try to remind people of is, if you do come across somebody that doesn t know somebody with IBD, you are IBD to them. So if you are sad and depressed and feeling really shy and timid like you can t do anything a nd you just wanna go home and crawl in a hole and die, that s the impression that they have. And at that moment, that might be 100% true. But there needs to be others out there who are like, Yeah, I have it. I go running. I have a full time job. I have a part ti me job. I have this, this, this so then that other person has a very different idea of w hat IBD is because they see me. Not everybody reaches that level of acceptance of the disease required to want to make it visible. Sometimes people are embarra ssed about the disease and do not know how to tell others about it. They prefer to hide it, to look as normal as possible. And that is okay: not everybody has to accept these redefinitions of the disease. However, within the online IBD community, evidenc e of people wanting to hide the disease is hard to find. People who want to hide the disease probably are not going to
216 post photos of themselves, post stories, or comment on other people s posts. The visual nature of the Internet, then, privileges people w ith IBD who want the disease to be visible; people who disagree might still frequent these communities, but how would anybody know unless they made their presence known? Summary Research Question 4 asked about the ways that the physical sphere intersects with the online sphere. In this section, I examined phenomena in the physical sphere that drive people online, such as stigmatization. I then examined ways that the online sphere crosses back to the physical sphere. While many people go online to address h ealth issues, some people then take what they learn online to modify or change their health behaviors in the physical sphere. Some people reported physical and emotional health benefits, and some reported that spending time in the online community helped t hem improve their relationships with their doctors. Finally, the physical and online spheres often overlap when people are encouraged in the online sphere to raise awareness of the disease in the physical sphere, or when friendships forged online lead to i n person meetings. The final research question was concerned with how people with IBD use new media technologies to redefine the social connotations of living with the disease. Many of these redefinitions are instigated by stigmatizations faced by patient s. People with IBD, then, use new media technologies like sharing stories or posting photos to redefine the disease in many ways: the refiguring of the body is beautiful; inflammatory bowel disease is serious and deadly; inflammatory bowel disease is humor ous; the disease makes one stronger; and the disease is invisible but needs to be made visible. Even though these redefinitions are prevalent, not everybody in the online community agrees
217 with them. Conflict frequently arises over these redefinitions, sugg esting that the social connotations of living with the disease are prone to change over time.
218 CHAPTER 7 DISCUSSION : TOWARD A HOLISTIC UN DERSTANDING OF PEOPL E, COMMUNITIES, AND TEC HNOLOGIES Thus far, I have covered many topics, including how online commun ities are constructed using new media technology; how the maintenance of online communities is challenged by internal and external forces; how online communities relate to existing support structures; how the physical sphere and online sphere overlap in re gard to online health behaviors; and how inflammatory bowel disease is recreated and redefined using social media. The overriding foci throughout this study have been the people involved in these communities, the uses and effects of Internet technologies, and the influence of disease on peoples behaviors and attitudes. In this chapter, I will show how these various factors influence and are influenced by each other, using activity theory as a guide. Application of Activity Theory to the Online IBD Communit y The use of activity theory involves more than just putting labels on behaviors, that is, identifying the means that mediate action, how a community divides its labor, or how subjects behaviors are influenced by a community. Barab, Schatz, and Scheckler (2004) warned that activity theory used poorly can lead to compartmentalization, simply identifying how a scenario fits the basic components of the theory without really understanding how the components work together in context. Baran and Cagiltay (2010) showed that the six main components of activity theory subject, object, community, means, rules, and division of labor can be examined in triads, which assists in thinking about how the different parts of the theory are related. While the interplay of many different combinations of components could be examined, I will focus on four. Major
219 research interests in this ethnography are the use of technology to achieve communicative goals, and the effect a community has on individuals and vice versa. Subject M ean s O bject: The E ffect of T echnology on A ction To begin, I will start with the first mediator articulated by activity theory, that of means as a mediator for the subject object relationship. While the means of action (as it pertains to this study, the means of communication) can be many, I am mainly concerned with the use of new media technology by individuals pursuing health related goals. While activities can take many objects, I will focus on three objects discussed throughout this study: seeking emotiona l support, seeking health information, and redefining IBD as a disease. The subjects in this case are both community leaders and audience members. Figure 7 1. Examining how individuals use new media technology to achieve communicative goals. One object people seek in online communities is emotional support. People want to know that others understand what they are going through, and they want comfort when the disease gets difficult to manage. They pursue this activity using many different actions. For in stance, sometimes audience members send email or private messages to
220 community leaders directly. They explain what they are going through and ask questions about the disease. Community leaders, in turn, often respond to individuals who email them. Individu als use the technology of email because sometimes they do not want to discuss the intimate details of their disease on a public forum like Facebook. Additionally, email allows people to type much longer messages than what can be found on Facebook, a commen t on a blog, or Twitter. Community members are not the only ones who use long form messages to find emotional support. Community leaders often write blog posts about their recovery from surgery or hospital stays, struggles they have with medication, and t he difficulty of keeping up with life in spite of their illness. They post these messages as a way of updating their community on what is happening to them, and audience members often post comments of support. Blog posts are very similar to email as a mean s of seeking support: long, text based messages describing what a person has gone through. But the application of these long form messages is slightly different: email, in this case, is intended to be read by one person; blog posts are intended to be read by many people. One is intended to be private; the other is intended to be public. Even though these applications are similar, the results might be different. Because email messages have the capability of being longer, community leaders can provide more th oughtful, detailed responses. Emotional support received through comments on a blog post look a little different: more comments are present, yet comments tend to be short, sometimes only a sentence fragment: Hang in there! Through which channel people pr efer to receive emotional support varies from one individual to the next, but the common activity of
221 seeking emotional support is accomplished with different actions: support through private email and support through public comments and content. Another c ommon object people seek is information about the disease, treatment, symptoms, and surgery. How individuals participate in this activity, though, varies widely depending on the technology. Some community leaders share health information through videos or blog posts, sometimes lengthy ones. Sometimes community leaders share information in a detached, impersonal way, but usually they rely heavily upon their own experience. The use of blogs or videos does not have to assume a subjective vantage point; medical professionals, too, often use these media to provide objective health information that makes no reference to the patient experience. In the IBD community, however, health information tends to be wrapped in a subjective package; some people dislike this pr actice, yet many audience members seem to appreciate the coupling of patient experience with objective medical information. Sometimes community leaders, and less often community members, share links to medical professional websites, health news stories, o r research articles. Even though the sharer of the link could easily add extensive commentary about how the medical information presented in the article relates to his or her personal experience, people usually do not do this. They might provide one line o f commentary, such as Check out this important new study! or I ve experienced this same issue: have you? The personal experience is largely excluded. This is especially true when people share links through Twitter; in 140 characters, one can barely lis t the headline of the article. In that medium, there is no room for personal experience.
222 In other social media spaces, people solicit health information. This is especially common on Facebook, where community members often ask the other members for inform ation or other assistance. In these cases, the people asking the questions usually base the questions entirely on their personal experience: perhaps the individual is experiencing some new symptom and wants to know if others have experienced it, too. When people respond to these questions, they usually do so by sharing their own personal experiences. Nothing about the medium of Facebook says that they have to do this: people could provide objective medical information without any reference to personal exper ience, or they could easily share links to authoritative medical websites. But in practice, they usually do not. In some cases, the technology does greatly shape communication: on Twitter, sharing a link to a medical website leaves no room for personal ex perience. When people share links on Facebook, they often exclude their personal experience. Yet, when asked a question in the same space on Facebook, people usually answer almost entirely in subjective ways. In other words, the medium can have a great inf luence on how people pursue the object of health information, yet the medium does not dictate exclusively how health information has to be shared. Kuutti (1995) explained that tools (in this study, new media technology) do not entirely dictate their use: The tool is at the same time both enabling and limiting: it empowers the subject in the transformation process with the historically collected experience and skill crystalized to it, but it also restricts the interaction to be from the perspective of t hat particular tool or instrument only. (p. 27) So far this discussion has focused on how the tools available to people affect how they pursue different objects. However, just because people pursue an object does not mean they will obtain it: outcomes can vary widely. For instance, the previous
223 chapter discussed several ways community members use new media technology to redefine IBD as a disease. One redefinition focused on was humor. Some people want the disease, or at least aspects of the disease, to be seen as humorous. The use of humor is likely a coping mechanism, but also helps people bond when they get the joke. This activity can be accomplished in different ways, but most often people perform this activity through the sharing of digital photos. Ho wever, the data show that not everybody finds potty humor hilarious: some people are deeply offended by it. They believe that it minimizes the seriousness of the disease, contradicting the redefinition of IBD as a serious illness, or that it insults people who truly struggle with the disease. The outcome of this activity, then, can be completely opposite of what was intended. This work adds support to what other researchers have uncovered about online communities. Murphy and Manzanares (2008) compared the activity of education in a physical high school classroom and a virtual high school classroom. Both spaces had different tools available, even though they were both pursuing the same object: education. The physical classroom had body language and visual cu es as mediating tools, whereas the virtual classroom lacked these tools. In addition, the physical classroom had a more centralized control structure, whereas the virtual classroom had a more decentralized structure. The researchers concluded: The decentra lised and distributed nature of the system of the [virtual classroom] and lack of physical co presence meant that e teachers could not have as a goal or secondary object of their activity the control of students attention. Instead, e teachers could at bes t aim to engage the attention of students to produce a virtual centrality that might be characterised by mutually shared interests and goals. (p. 1069) Other researchers have shown, as explained in Chapter 2, how the use of online technology can lead to r edefinitions of a profession or diseases (Hurley, Sullivan, &
224 McCarthy, 2007; McCabe, 2009; Perrotta, 2006). These researchers typically focused on the rhetoric employed by individuals through the use of text based messages. What this study adds is an unde rstanding that individual action toward goals is affected by more nuanced processes than just text based communication. The specific technologies available to individuals, and the social media platforms with which they engage, can have a significant to p rofound impact on the ways individuals relate to objects and whether they even realize the outcomes they seek. Subject C ommunity O bject: How C ommunities S hape the B ehavior of I ndividuals Figure 7 2. Examining the influence of a community or communities on the way individuals communicate about health. Not only is the subject object relationship mediated by technology, but it is also mediated by a community. While activity theory is usually concerned with community in the singular, this research has shown that community can be conceptualized in many ways. Individuals, then, do not communicate within the context of one community, but within a multitude of communities. While I have spoken of the greater online IBD community at times, I have also focused on i ndividual IBD communities (the 13
225 communities explicitly studied), the medical community, and communities formed through established support structures. Communication by individuals, then, is shaped by multiple cultural contexts, which naturally are not al ways in alignment about the activities they pursue or the actions they use to get there. I will start by examining the activity of seeking emotional support again, but this time, instead of looking at the way technology mediates the subject object relatio nship, the focus is on how community mediates this relationship. This study focused on communities that were publicly accessible. While some platforms require a person to have an account to comment, like Facebook pages or YouTube, all of the communication in these communities was still available to the public without a log in. While closed, private online support groups for people with IBD do exist, they are not nearly as prevalent or easy to find. It is interesting that people seek support in public spaces , as members share very personal experiences, yet do not seem to be concerned about outsiders accessing these groups. Occasionally audience members did say that they were upset about trolls in these communities, outsiders who came in to say something pro vocative just to upset people. While this does happen, the behavior is rare. For reasons that deserve further investigation, people seem to be comfortable talking about personal subjects, even though these communities are almost entirely public. It is almo st as if these communities meet in a glass house situated in the middle of a busy public square, yet are so inward looking that they do not realize, or maybe they forget, that the walls really are glass. With the exception of private emails or direct mess ages, community leaders have all embraced technology that is socially driven: blogs always have open comment
226 sections, anybody can tweet anybody else, and comment sections are always open on YouTube (even though channel administrators can close comments se ctions if they choose to, as explained in Hess 2009 study, described in Chapter 2). Perhaps because community leaders have chosen to embrace social media technology, audiences in turn use this technology because there are no other options available to the m. Social technologies are built into the fabric of blogs, Facebook, and video sharing sites: social components cannot easily be removed from these spaces. Because so many community leaders have embraced social media technology, perhaps they have unintenti onally created a superstructure that dictates how these online communities function: they function in the open, and people should get used to seeking emotional support in this way because social platforms are used widely in the online IBD community. The i nfluence of the community on the way people pursue objects is especially on display when it comes to redefinitions of the disease. The activities people with IBD perform when redefining the disease are many: people with IBD are beautiful; the disease is a serious disease; the disease is more than a pooping disease; the disease makes one stronger. People with IBD collectively create these reconstructions in online spaces. Gunawardena et al. (2006) studied online learning communities and argued that the goal of these communities is not necessarily individual learning, but collective learning. While people with IBD are likely influenced personally by some of the redefinitions of the disease common in the online community, it is through the constant communicatio n among members, the sharing of stories and photos, that these redefinitions come into being.
227 For example, one redefinition that people are fond of is IBD is an invisible illness, but needs to be made visible. The very act of discussing this redefinitio n in a public community simultaneously makes the disease visible. Many people with IBD reported that when they were first diagnosed with the disease, they knew very little, or even nothing, about the disease, or knew nobody else with the disease. Because p eople have little experience with a disease that affects their lives in significant ways, they often have no orientation to the disease. Should they be scared? Should they be comforted that they do not have something worse? It is certainly possible, then, that many community members learn about redefinitions of IBD by participating in online communities. They likely do not create these redefinitions in isolation, without the influence of others with the disease, or at the very least, they are shown how thes e redefinitions function in action, providing a model for how to think about the disease in their own lives. As illustrated, one IBD community the national CCFA organization tried to popularize one view of IBD through its Behind the Stall campaign, but others in the online IBD community criticized the CCFA, thinking they were focused too much on the toilet and not other aspects of living with the disease. The online IBD community did not respond to the CCFA, though, with one voice: many people liked the campaign. This example shows how multiple communities, all working toward the same object raising awareness about IBD got into conflict about this one awareness campaign. Not only did the communities disagree about how to perform this activity of raising awareness, they got sidetracked about what activity they were pursuing. What started as a campaign to raise awareness ended in a discussion about what IBD is and how it
228 should be defined. Trying to neatly describe an activity, in this case, proves especial ly difficult. Community M eans O bject: How C ommunities U se T echnology to A ccomplish T heir G oals Trying to examine the mediators of technology and communities in isolation, though, has proven tricky, as communities are constructed using technology and the u se of technology simultaneously creates the community. In this next analysis, I focus on how communities can perform similar actions and yet direct those actions toward very different objects. To review, under activity theory, activities are made up of act ions, yet the same action can contribute to different activities, and conversely, activities can be performed using different actions. To keep this analysis constructive, I draw attention to three simple actions performed using new media technology posting text, posting images, and posting videos and how these simple actions can be performed by communities in drastically different ways. Figure 7 3. Examining how communities use similar means to pursue many different objects.
229 While the World Wide Web all ows for diverse ways of communicating, text based communication is still very common compared to more advanced forms of media. Text is quick to create and can be easy to consume, as it is often presented in short bursts in the online community. One very co mmon action in the online IBD community is the sharing of personal stories. This one action, though, can contribute to many different activities. Sometimes stories are told for the purpose of emotional support. If one community member tells a story about s omething bad that has happened because of her or his disease, another person might share a similar story to show that s/he, too, has had the same struggles and can empathize with the first person. That same story, though, could also contribute to the activ ity of sharing health information. If people are discussing complications from surgery, an emotionally supportive story could also contain the following pieces of information: how the person s complication was diagnosed, what symptoms s/he experienced, and how the complication was treated. Or consider another example commonly seen in the online community: people explicitly sharing ways in which they have become stronger through their trials with IBD. Such a story might be meant to encourage others in their fight against the disease, while at the same time such a story shapes how the disease is defined (i.e., the disease makes one stronger). All redefinitions of the disease were a reaction against stigma that people have faced. A text post that redefines the disease might also criticize a community, such as the medical community, the CCFA community, or even other parts of the online IBD community. The fact that text based comments, stories, and blog posts are simple actions that can contribute to many diffe rent activities calls into question the value of research
230 that examines health communities to determine what percentage of messages should be labeled informational support, emotional support, instrumental support, and so forth (e.g., Bennett et al., 2001 ; Braithwaite et al ., 1999; Eichhorn, 2008; Frohlich &Zmyslinkski Seelig, 2012; Mo & Coulson, 2008; Qian & Mao, 2010 ; Tanis & Fortsgen Sillmann, 2011 ; Westaway et al., 2005 ; White et al ., 2009 ). While explicitly giving actions a code such as emotional support or informational support has some value in providing surface level observations of what people talk about in online health communities, and while some messages are admittedly easier to classify than others (especially if they are short), defini ng actions as contributing to a single activity (such as stating that a personal story contributes to the activity of emotional support only) oversimplifies how people communicate, and even what they communicate about. While text based actions are versat ile in the number of different activities they can contribute to, photo sharing actions have similar goals yet accomplish these goals in very different ways. For instance, when a person shares a photo of him or herself post surgery, this photo might be sh ared for the purposes of providing (or seeking) emotional support, redefining people with IBD as beautiful, or simply to connect with others in the online community on a more personal level. Photo sharing, though, does not often seem to contribute to the r ange of activities the way text based actions do, at least not in the online IBD communities. People rarely share health information through photos. Occasionally a person will post an infographic an image that provides facts about the disease alongside sim ple illustrations but this is rare. The action of photo sharing does not seem well suited for sharing health information, at least when used in isolation without the assistance of text. Photos are also not often used to criticize the
231 medical establishment or other support structures. While people occasionally share a photo with an observation about how doctors treat patients, or with a mock quotation from a stupid doctor who does not understand patient s needs, these photos seem to be used for humorous ef fect, not to thoroughly critique the medical professional. Hard hitting criticism, though, is very easily accomplished through text. While photography as a medium does seem limited in the types of activities it can contribute to, it also has some advantag es that text alone does not. Many people in their redefinition of people with IBD as beautiful and sexy, despite (or because of) their disease post photos of themselves to support their argument. Photos often show them smiling, and many times in various st ages of undress. When it comes to the activity of redefining people with IBD as beautiful, photos carry far more rhetorical weight than text, even when the two actions are paired together. And when many people in a community upload photos of themselves, th at action carries more weight than a single blogger posting photos of him or herself in isolation. Finally, the action of posting video also affects a community. Of the three actions writing text, sharing photos, and posting videos posting video is the l east performed, at least within the online IBD community. When it comes to the development of the community, video sharing greatly privileges the voices of community leaders, not community members. If the person has the means to record and upload videos, h er or his videos dominate the conversation. On YouTube, it is technically possible for audience members to post a video response to somebody else s video. No video responses were posted in any of the communities studied. In fact, in all my years of posting videos on YouTube, both related to the IBD community and for other purposes,
232 people have only twice posted a video response, and in both cases, the responses were unrelated to the initial video: in other words, not a true, appropriate response. Video as a technology, of the three examined in this section, is more difficult to use. Videos take time to record, edit and produce; they require the most physical technology to create; and creating quality videos takes a certain skill level that some people in the online community lack. In this community, performing the action of creating and posting a video leads most often to one way communication between the person who posted the video and the audience who watched the video. Conversation between audience membe rs, even in the comment sections on videos, is rare. The medium does not produce a multi way conversation the same way text and photos do. The sharing of video might still contribute to these same activities: providing emotional support, providing health i nformation, and redefining the disease. The action itself, though, does not contribute to the construction of a community in the same way that other actions do. Community D ivision of L abor O bject: The P owerful I nfluence of the C ommunity L eader Activity t heorists argue that the community object relationship is mediated by a division of labor. In other words, when individuals perform actions in pursuit of objects, not only is that relationship mediated by the context of a community, but within that communit y, different people take on different roles (Kuutti, 1995). Individuals might perform different actions depending on their role, and while their actions alone will not accomplish a goal, the collective actions of individuals will accomplish the goal of an activity.
233 Figure 7 4. Examining how the differing roles within a community. For instance, there is much evidence from online education communities that community members can indeed take on different roles and perform different actions in pursuit of th e same activity. In the online learning community Yang, Yeh, and Wong (2010) examined, students interacted with each other to read, critique and edit papers, and repost them as a way of improving the final product. Students were directed toward tangible ed ucation goals and took on different roles in the community depending on the need. Bober and Dennen (2001) examined an online graduate education community to show how the teacher and the students each have different roles to play in the functioning of the c ommunity. As explained in Chapter 2, Lindsay, Smith, Bellaby and Baker (2009) analyzed an online health community for people with coronary heart disease. The community was at first moderated by health professionals, but later the health professionals withd rew from the community to see if it could sustain itself. What the researchers found was that the community needed some sort of moderator to sustain the group; they suggested that in the future, a health community of this nature
234 needs an exit strategy in p lace to transfer moderating duties from health professionals to participants. Herein exists one difference between educational communities and health communities. Education communities are typically short term: the length of the class, often a semester b ut maybe two semesters. Another difference is that education communities are directed toward explicit, tangible learning goals. Online communities, though, have no set length of existence: they could last indefinitely. In addition, for people with chronic illnesses, the obtainable goals are less concrete. People can receive support and can learn about the disease, but because the disease lasts for life, their needs might never be fully satisfied. In the online IBD community, communities manifested little di vision of labor. The community was centralized around the leader and what s/he posted. Communication between members does happen, and it can be initiated by other members, but most of the time, the leader provides the impetus for discussion, such as by pos ting a daily question on the Facebook page. Leaders also shoulder the majority of the burden in creating new content. Some communities studied like Girls With Guts, the Great Bowel Movement, and Awestomy do have some division of labor; these communities are maintained by two or more people, and some even have regular bloggers so that the founders of the community do not have to create all the content themselves. But most communities examined are led by one individual, and as explained in Chapter 4, these leaders put in a lot of work maintaining their community. They not only create new content, but answer emails and moderate and monitor what their audience members post. Adam s iHaveUC community is probably the closest to being an exception to the leader ce ntered
235 community; while the community is still oriented around him, his website features almost 2,000 member blog posts, so members do play a significant role in updating the website. Because communities are centered on leaders, the community can flounder without a leader present. When there are gaps in posts, audience members do not communicate with each other as often. Audience members are certainly free to discuss amongst themselves by commenting on old material or posting their own stories to Facebook pages the social media platform of those examined in which it is easiest for audience members to post their own content but this does not happen often. The structure of these leader driven communities is in part supported by the new media technology used t o create them. Many blogs, for instance, give administrators the capability of adding new administrators: a community leader, in theory, could add as many audience members as s/he wanted to the blog as authors, and those people could post at will. Without that explicit administrative role given by the blogging platform, however, the only people who have control over the direction of the blog are the community leaders. Again, while Facebook pages do seem to be the most collective of the popular social media platforms anybody can share links, ask questions, or upload photos or videos the platform still privileges posts by the community leaders, as discussed in previous chapters. The posts by the page administrators are given more space and are shown to visito rs first, whereas community member postings are relegated to their own section, a space that is often not seen or visited, at least judging by the lack of comments many community member postings receive.
236 Wang and Chen (2010) designed an online learning co mmunity using the principles of activity theory as a guide. The component of activity theory to which I have devoted the least analysis is rules, the mediator between the subject and community relationship. Wang and Chen created rules for social interactio n to guide students in an online learning environment, rules such as: deadlines for posting, guidelines for interaction between students, benchmarks for the quantity and quality of online posts, and social rules defining how students should discuss importa nt issues while still being collegial to each other. These rules provided a structure for how the online community should operate, and within that structure, students assumed different roles in the community. Such explicit rules probably work in education settings where goals of action are finite and attainable and where the teacher wields a very real power over students in terms of assigning grades. Health community leaders, though, do not hold the same sort of power over their community members. They cann ot force them to participate in the community, nor do they have any say in the management of the person s disease. Community membership is voluntary. While implicit rules for social interaction be nice to each other, talk about the disease truthfully, do n ot argue still exist (all cultures have them), the rules are not spelled out, and there is not much a community leader can do to enforce social rules, other than deleting somebody s comment or banning them outright from posting. While leaders could provide guidelines for how community members should treat one other, such rules were never witnessed. Because these communities lack a structure of compulsion, they lack enforceable rules about how community members should behave, and thus, the division of labor is two sided. Community leaders initiate, and community members follow and
237 respond. No judgment is contained within this analysis: these communities seem to be functioning well as leader led spaces. Many people enjoy being in these communities. However, t he leader centered nature of these communities may make any patient led online IBD community difficult to sustain. When the community leader no longer has the desire or ability to maintain the community, it seems likely that the community will either slowl y languish as it declines in popularity and use, or the community will disappear entirely when the leader decides not to maintain it anymore. Given the structure of social media technology, which not only privileges leader voices but also provides administ rators with complete control over the functioning of the community, audience members are unlikely to assume leadership roles in these communities unless the leader explicitly gives away the community by transferring to another administrative log in info rmation. Development of Communication Theory What this chapter has shown is how individuals, communities, and technology exist in relation to each other in the context of health communication. While activity theory is not a mass communication or health co mmunication theory, it seems to assist greatly in understanding how communication is shaped by mass communication tools, how technology assists in creating communities, and likewise, how communities bend technology to accomplish their purposes. The theory also provides a guide for understanding both interpersonal and mass communication behaviors in the context of social media technology. This technology does not fit neatly into definitions of interpersonal or mass communication. In one way, social media tec hnology is a mass communication technology, capable of reaching dozens to hundreds to thousands of people at once, as can be seen in how community leaders use this technology to reach
238 diverse audiences spread across the globe. Yet in another way, this tech nology is highly interpersonal: some messages are broadcast to the masses, and yet comments and discussions among audience members or between community leaders and audience members show how this technology is used just as often for more intimate communicat ion exchanges between individuals. While activity theory goes a long way toward contributing to a holistic understanding of the near simultaneous phenomenon of a health message existing as both interpersonal and mass communication, the framework is strai ned when trying to examine the effects multiple communities have on individuals communication behaviors. While this use of theory and analysis was confined to a specific type of community and a specific health condition, activity theory has the potential to inform how other online health communities use new media technology to accomplish their goals.
239 CHAPTER 8 CONCLUSIONS : FUTURE AVENUES OF RE SEARCH After years of living with ulcerative colitis, being immersed in the online community, and pursuing degree s in higher education, I arrive at the end of this dissertation with one overriding thought: what does it all mean? What was the point of going to graduate school, investing five years of my life investigating the phenomenon of patients talking to patients online? While I could write much about what this line of research means to me personally, instead I will step back in this final chapter to articulate what this research might mean to other people. Communication research begs to be applied by scholars, pr actitioners and the public at large. I start by summarizing this study s major findings, then detail some of the limitations of this ethnography. I then propose several avenues of research that this study opens up. I also discuss ways in which digital ethn ography can be conducted more effectively. I conclude by exploring several ways this research can be applied by medical professionals, patients, and caregivers. Summary of Major Findings The main focus of this study was how people with chronic illness use social media technologies to create and maintain online health communities. The social media technologies themselves are not complicated to use. All platforms Twitter, Facebook, blogs, YouTube, and more primarily do two things: they connect people togethe r in a common online space, and they provide people the means to communicate with each other and share content. The forms of communication available are limited; depending on the platform, people can share text messages, images, or videos. As shown, people with chronic illness use these limited communication tools in numerous ways to create a
240 supportive community. Community leaders and audience members alike have different roles to play in a community. Leaders initiate conversations, post the majority of th e content, provide emotional support, and share health information. Audience members respond to these postings by developing conversations, adding supplemental content (e.g., when audience members upload photos of themselves at the request of community lea ders), providing emotional support to others in the community, and sharing health information based on their personal experiences. Creating and defining an online community is difficult given the web like structure of these spaces. Online health communiti es no longer have to be confined to a single website or platform. Every community examined utilized multiple platforms, spreading their communities across several popular online spaces. This spreading of online communities makes them multifaceted, but at t he same time can unbalance a community. No online community is equally active across all social media platforms. Some online communities were more active on Facebook. Others had very extensive blogs, focusing mostly on written content. Still others existed primarily on YouTube, but still relied on other platforms to make up for the limitations inherent in YouTube s structure. Online communities have a wide reach and connect with people all over the world, but barriers exist that challenge the functioning and maintenance of these communities. Community leaders invest considerable time in creating new content and supporting their audiences. Not only do they balance this time commitment with other life obligations such as family, work, and school all of them also have chronic illnesses. IBD can be an unpredictable disease, and sometimes it can incapacitate
241 people for weeks at a time. When this happens, community leaders often substantially decrease the amount of time spent maintaining their communities. And be cause most communities are maintained by one person, when a leader stops initiating new conversations, a community can go into a period of decline temporarily or sometimes permanently. While audience members do have the tools to create their own content (though the extent of this varies greatly by social media platform), they often do not initiate when the leader is not present. As discussed throughout this dissertation, researchers have long known that support communities exist to provide emotional supp ort and health information. Certainly these activities happen in the online IBD communities, but this study goes beyond simply identifying these behaviors to examine how these behaviors exist in relation to established support structures. Many people in th e online community criticize medical professionals, particularly gastroenterological doctors, and non profits like the CCFA. These online communities exist partially because of perceived support gaps left by these established structures. Many people acknow ledge that while established non profits raise money for research and support patients in many ways, groups like the CCFA do not meet every patient s needs for emotional and informational support. Many patients prefer the freer, more personal support offer ed by community leaders. Some of the community leaders studied had even created their own non profits to cover gaps left by the CCFA. While many people reported bad experiences with their medical care team, the online community as a whole is not antagonis tic toward medical professionals. Community leaders and audience members alike recognize the important role medical
242 professionals have in assisting in the management of a patient s health. People realize, though, that medical professionals cannot educate a patient about everything related to her or his condition, nor are they expected to. Patients seek the support of others by sharing their own health stories and asking each other questions about what they have experienced with medication, side effects, sur gery, and diagnostic tests. Most audience members reported that the health information found in online communities is very beneficial in managing their health; people almost never mentioned negative health effects from their involvement in the online commu nity. This study went beyond existing research by examining specific ways that online communities cross over into the physical sphere. Online communities do not exist in isolation, and they do not exist entirely in the online sphere. People bring their ph ysical sphere concerns online when they discuss their health situation, and those online interactions can then shape how they manage their health in the physical sphere. Even the online community can extend into the physical sphere, in that the most involv ed members of the community often report meeting each other in person, either at CCFA events or more informal gatherings. People report that meeting an online friend in person can deepen that relationship in ways that could not be accomplished online. Fin ally, social media technology not only shapes online communities, but also can shape the very definition of IBD. While most patients in the online community agree with medical non profits and medical professionals about the biomedical aspects of the diseas e, IBD carries with it many stigmas. Leaders and community members alike frequently reported being stigmatized, at some point, because of their disease. People in the online IBD community are tired of these stigmatizations and thus use new media
243 technology to argue for new definitions of the disease. For example, people want to be seen as beautiful despite having a disease that affects the bowels in gross and embarrassing ways. They counteract the stigma they feel by uploading photos of themselves in the ho spital, after surgery, and with their ostomies, using social media technology to spread a counter narrative that people with IBD are still attractive. People with IBD believe that the illness is fundamentally an invisible illness, but through the use of ne w media technology, the illness can be made visible. These are just a few of the ways social media technology is used to redefine and recreate the disease. These findings illustrate that support communities are about more than providing emotional support a nd informational support. They are spaces to raise awareness for the disease by redefining the social terms of the disease. Limitations Interpretivist research always carries with it certain subjectivities, not only in topic selection, participant selecti on, and methodology, but also in the interpretation of results. My subjective viewpoint is an inescapable trait of this kind of research, but subjectivity itself is not a limitation. What can be a limitation, though, is the possibility that another researc her s interpretation of my study s results could contrast or conflict significantly with my own interpretation. In other words, if another researcher conducted this study in a similar way and had access to my data, would that researcher reach similar concl usions as I have reached? That is an important question, and unfortunately one that will likely go unanswered; because very few people are researching the online IBD community, there is no way to know if somebody else would see things in a similar way. Per haps another researcher would be more critical of the way health information is shared in these communities. Maybe people in the online IBD community, the leaders
244 and the audience members, will see things differently than I do. Others might have more exper ience with stigma and negativity in the online community than I witnessed. This does not mean that the reader has to accept that my subjective vantage point will remain unchallenged. There are three ways that I protect my study against drastically differe nt interpretations. First, in the beginning of the study, I clearly outlined how my story factors into this study and what my theoretical assumptions are. Acknowledging the way my philosophy informs my research allows the reader to decide for her or himse lf whether my personal experience has adversely affected the results and interpretation. Second, I have included many examples from my data to support my interpretations: quotations from participants, quotations from online material posted in these commu nities, and examples of how certain controversies arose and were handled by the online community. I have also included ample links to the communities under investigation, making available plenty of data for the reader to examine. Finally, this study has been shared, at the very least, with the community leaders who participated in this study. They understand these online communities as well as I do: their insight will be invaluable in either reinforcing my interpretation of these communities or offering a lternative interpretations. Showing other insiders my results, though, still does not address the question: how would an outsider, somebody without the disease and not involved in these online communities, interpret these data? But at least it reduces the mystery of the role my subjectivity played in shaping this study. Participant S election In this study of patient communities, I managed to hear a variety of perspectives. I studied three patient communities that were also non profits, one that was a busin ess,
245 several that had small business components, and one led by a woman who is a staff member for the CCFA, though her community was not explicitly connected to the CCFA. But many voices were left out simply due to time constraints. In particular, the pers pective of established non profits like the CCFA and UOAA is missing. These support structures have been around for a long time, and while they have a significant presence in the physical sphere, they also have a sizeable online presence. Another missing p erspective is that of medical professionals. While I had some evidence of how medical professionals have responded to online communities, in general, their voices were missing. Organizations like the American Gastroenterological Association do have a prese nce on social media platforms; how these professional led communities differ from patient led communities remains to be seen. The E thnographic M ethod As a qualitative research method, ethnography seems more robust than other qualitative methods used in is olation. I gathered data from multiple sources using a variety of different methodologies: in depth interviews, open ended surveys, content analysis, field observations, and personal experience. However, even with the multitude of data collection opportuni ties afforded to me by the ethnographic method, this study still has shortcomings. For example, my method is biased to study extant online communities. I only referenced two online communities that were in decline throughout the data collection period: Fe rnpixel s community and my own UCVlog community. The challenge of this research is that I can only study what is there: I cannot study communities that no longer exist. This method allowed me to study online communities that are currently active, and in so me ways I could study the recent past of those communities as far
246 back as their public, online archives go. To find a community in the process of dying and then to watch it fade from existence might occur purely through happenstance. The only real way to s tudy communities that are no longer online would be to talk to people who were involved in those communities, to ask them about their recollections of what that community was like. Studying extant communities is a limitation as the voices of those in succ essful communities are privileged over the voices of others who may have been involved previously in an online community. Perhaps some communities were pivotal in laying a foundation for future communities to build upon; if those foundational communities disappear, though, so do their voices, even though their work indirectly lives on in extant communities. Another limitation of digital ethnography is that of the researcher s stamina: a researcher can only examine so much of a topic for so long before a s tudy has to be concluded and the results written up. Of course, this is a limitation for nearly all research: ideally many researchers would like more time fully explore their topics. However, the possibility of researcher fatigue seems to be realized much more quickly with digital ethnographic methods. This is largely due to the corpus of data: even studying three or four communities can easily take dozens of hours and produce thousands of pages of digital data. I was fortunate in that the communities I in vestigated were mostly two to four years old. If I were to follow up with these communities in five or six years, I could possibly have a decade s worth of online material to sift through for each community. The sheer amount of data available to digital et hnographers is a blessing at times but perhaps mostly a curse. There is just too much data for any one researcher to examine it all exhaustively. While ethnographies are never meant to be
247 representative of a population, one thing that makes for strong ethn ographies is a multitude of voices. I studied 13 communities in detail, but there were many more communities that I would have liked to study perhaps two dozen prominent voices with perspectives not captured by my study which would have provided a more nua nced view of the topics under investigation. I very quickly reached the upper limit of what I could reasonably study given my time and resource constraints. Finally, just as digital ethnographies are biased to study communities that are there, the methodo logy is biased in studying community members who are present and visible. Researchers have long recognized that a sizable portion of a website s audience might only read and watch, consuming content but never contributing to the discussion. Sometimes these people are called lurkers, a term that seems offensive as it conjures in my mind thoughts of slimy undead dwelling in dank dungeons. The term also seems to suggest that these people are freeloaders, that they derive all the benefits of an online commu nity without ever having to make themselves vulnerable by contributing. I do think that this silent segment of an audience can be just as much a part of a community as the vocal segment. Just because a person does not contribute to a community in public wa ys does not mean that they do not benefit from being in that community, or even feel a kindred spirit with people in that community. I feel a part of many online IBD communities, including some to which I have never contributed publicly. Digital ethnograph ies, though, can only study what is there, so if people do not contribute to a community in some public way it is difficult to get their perspective. There are still be ways of reaching the silent segment of a community, such as through the use of anonymou s surveys such as the one used in this study, but the methodology is
248 not perfect. Even harder to capture is the perspective of the transient segment of the audience, the people who drift in and out of communities and do not spend much time on any one websi te. Future Research Opportunities Good theory is supposed to be heuristic, that is, generative of more questions (Shoemaker, Tankard, & Lasorsa, 2004). In many ways, I arrive at the end of my study with only a few questions answered, and with the question s I did answer not answered to my satisfaction. The patient experience is far more multifaceted than I was able to capture, and social media technology has many facets left unexplored by my study. Even if I had the productive capabilities of ten scholars, this area of research needs something beyond more researchers who conceptualize and study online patient communities in the same way I do. People from diverse backgrounds deserve to have their voices heard and their perspectives judged according to acade mic standards. Somebody from a medical background almost certainly would see these communities differently than me. And people more in tune with digital technology from both a software and a hardware side would provide yet another perspective. Examining th ese phenomena from multiple perspectives will give scholars a better idea of how online communities affect a patient s health. Online H ealth C ommunities for O ther C hronic H ealth C onditions One obvious extension of my research is to study online patient co mmunities for other chronic conditions: cancer, diabetes, genetic diseases, viral infections, mental health conditions, infectious diseases, birth defects, and more. Even though my study was concerned with the multifaceted nature of online IBD communities, patient communities for other health conditions are likely just as multifaceted. While I cannot
249 say much about how cancer communities operate in the era of social media, or how people with HIV/AIDS use new media technology to redefine their disease and ch allenge stigma, I have had some glimpses of other patient communities through this study. Many people with IBD develop other chronic illnesses that may or may not be related to their initial diagnosis, and they occasionally link to cancer blogs, arthritis support groups, or other websites created by people with other chronic conditions. People with other health conditions are using social media. This study cannot say, though, how people with other chronic illnesses use new media technology to create their communities, what challenges they face in maintaining their communities, and how those online spheres intersect and overlap with the physical sphere. Chronic illnesses are similar in that they can be debilitating (oftentimes life threatening), have no cur e, and affect millions of people. But some diseases are more widely discussed and well known compared to others, like breast cancer. Some diseases have something approximating a cure and some do not. Some have more treatment options available than others. Some affect only specific demographic groups, and some are blind to the status of the person infected. Researchers need to see how online communities differ from each other based on characteristics of the underlying disease or the population affected by th e condition. Creation of O nline C ommunities O utside of the United States Another line of research concerns the use of online health communities by people outside the United States. Theoretically, the Internet allows people to connect with anybody in the w orld. People often have an idealized view of the Internet community, believing that anybody, anywhere in the world can connect through a common web infrastructure. And while the ideal has a reality in some ways (websites
250 like Google and Facebook have a sig nificant non U.S. audience, for instance), at least as it pertains to this particular study, the online IBD community was mostly constructed among people in the United States, with perhaps the most significant overseas audience presence coming from English speaking countries like Canada and the United Kingdom. Occasionally somebody from Pakistan, India, Mexico, Germany, Israel, and so forth would comment, but those comments were rare. As a community leader, I had the most interaction with overseas audiences through direct and private messages, not public channels. I have had viewers in dozens of countries around the world, some who speak English better than others. But this segment of the audience is in the minority. Instances of two way communication betwee n international audiences are so rare that it is really hard to say how the international community fits into the online IBD community. Use of N ew M edia Technology to R ecreate and R edefine a D isease This study looked at how people with IBD use new media t echnology to recreate and redefine what it means to have IBD. In each instance, people with IBD challenged stigmas that they had experienced overtly or subtly. In the case of this study, people in the online community were reacting against stigmas that con textually made sense for this disease: IBD affects the bowels in numerous ways, so it is understandable that people with IBD want to be seen as beautiful and want the disease to be seen as something more than a pooping disease. The specific recreations and redefinitions likely do not apply to other chronic illnesses. However, people with other chronic illnesses might similarly use new media technology to recreate and redefine what it means to live with their condition. While the redefinitions likely cha nge, at least in part, from condition to condition, the use of social media to facilitate these redefinitions might be similar. Or people with other health
251 conditions might use social media technology in ways that the online IBD community has not discovere d yet, or in ways that do not make sense given the cultural context of IBD. It is important for researchers and medical professionals to know how people with a particular health condition view their disease, as their conceptualization of the disease may af fect the treatment options they pursue, their personal orientation and attitude about the disease, or their emotional health. Advancing Digital Ethnography In traditional ethnography, researchers are limited by their eyes and fingers: there is only so mu ch they can see in a given day, and there is only so much they can write. Even though they are immersed in a culture for a long period of time, they will never witness and record everything that might be of importance to their research questions. A digital ethnography, at first glance, seems to solve one problem of time and space: as long as a digital community is viewable to the researcher, s/he can record as much information as possible. Indeed, one of the advantages of digital technology is the ability t o archive, in some fashion, anything and everything that happens online. This ability to copy data, which some researchers call scraping data, poses many challenges to the researcher, including: How will these data be stored? How will data be captured in the most efficient manner possible? How will data be organized for easy access? Mahrt and Scharkow (2013) provided a great review of the many problems researchers face in using so called Big Data, as well as the opportunities large datasets afford. Inst ead of focusing on all the challenges in using extensive amounts of data, however, I want to expand upon one challenge that plagued me throughout the research, which I alluded to in the beginning of this chapter: How does a researcher even begin to analyze all this data?
252 While some digital data can be analyzed quantitatively with the use of software analysis programs, my report was primarily concerned with qualitative analysis. Often qualitative researchers in communication analyze their data by reading th rough every piece of data, giving each unit a code. Data are then reread, and codes are modified based on what is found throughout the dataset. Eventually similar codes are condensed, codes that are rarely used are dropped, and finally overarching themes a re uncovered. With a dataset as large as this study s, it was not possible to go through such an iterative process of analysis. If every piece of digital data available had been collected, I would have had thousands of individual web pages, which might tra nslate into tens of thousands of pages in Word or PDF form; tens of thousands of comments; thousands of photos; more than 50,000 tweets; dozens of hours of video; a couple hundred pages of interview transcripts; and more than 100 open ended survey results. Given the time constraints and the limits of what a researcher can carry inside his or her own head, even reading through all of this material once, assigning every unit of data a code, would be nearly impossible. Some researchers have proposed solutions to practically analyzing large datasets. Reasonable solutions incorporate both computer data analysis with manual analysis, which provides the researcher with surface level observations, which comes from the computer, and depth of explanation, which comes from the manual analysis (Lewis, Zamith, & Hermida, 2013; Salah, Manovich, Salah, & Chow, 2013). For certain research questions, a blend of computer and human analysis seems entirely appropriate. Mahrt and Scharkow (2013) asked an important question, thou gh, that
253 digital researchers often overlook: Is the use of Big Data theoretically justified? In some cases, it may not be. From the studies I have read, from the training I received in graduate school by my professors, and from my experience working on re search projects with other graduate students, the conventional wisdom when it comes to digital research is this: If you can copy data from a website or social network, you should. The arguments in favor of copying everything a researcher sees are many: Th e data might not be around forever. If a reviewer of a journal ever questions your findings, you can always go back to your data. If you did not capture it, and the website disappears, you are out of luck. If you do not capture every data point possible, y ou might miss something important in the analysis. While these arguments in favor of capturing data have some merit, upon reflection on the execution of my study, I do not find any of these arguments persuasive. First, it is true that data not captured mi ght disappear someday. Datasets are always prone to decay, no matter what kind of research. Fortunately, qualitative research does not hinge on the health of any one piece of data. Qualitative research is concerned with trends and patterns. If I was invest igating a particular website and one blog post or one video, plus all comments associated with that page, suddenly went missing, the effect it would have on my overall analysis should be minimal. If I am really uncovering trends and patterns of a given phe nomenon, there will always be more examples, more data to analyze. Even if an entire community disappeared as happened when a community I wanted to investigate disappeared from the time I wrote my proposal to the time I was given approval to begin my study the effect on my study is still minimal. While I really
254 wanted to study that one particular community, all I really lost was some color to my writing; if that community was still extant, I probably would have included a few quotations from that material, which would have added a different flavor to my analysis, but beyond that, the overall analysis would be largely the same. Second, it is always possible for an outsider to question the validity of my results, as could occur when I am seeking publication o f this study and a reviewer questions whether something really happened, or whether somebody really wrote what they did. I know of no communication scholar, however, who has had a reviewer or scholar ask to see his or her data (though I have heard of this happening in the medical community). Just because this does not happen often, though, does not mean researchers should not archive their data; a norm of the scientific community is transparency, so if somebody wants to see the data, scientists are supposed to make reasonable accommodations in showing at least a portion of the dataset. However, temporality is the nature of some types of data. In traditional ethnography, the ethnographer cannot go back and re witness an event. An autoethnographer, who relies upon personal memories, cannot go back and recollect data. Sometimes data points disappear. Third, it is true that if data is not captured in total, if only a portion of a dataset is saved, that the researcher might miss something. I did not capture every piece of electronic data available to me: I started to, but the process was too overwhelming, so I became more selective in the data I captured. Did I miss something important? Perhaps. Did I miss any really good quotations that would have helped me prove my points better? Undoubtedly. But again, this type of research is concerned with trends and patterns: even if I miss something, I should still find evidence of a trend elsewhere
255 in my data. Second, my dataset was not so volatile that major chunks went mi ssing two weeks after I examined a website. In fact, when I was writing the results of this study, I often went back to the original websites just to confirm the accuracy of a data point. In many cases I was revisiting websites I had visited six months pri or (and some of those posts had been added two to three years ago). In every case, I found the webpage, post, or video exactly the same as when I first observed it. A N ew M ethod of D igital D ata C ollection There are many things I would do differently with this study if I were to conduct it again; learning and personal development of methodology happens with every researcher. But one major change I would make is this: I would only copy and save digital data that was potentially useful for answering my resear ch questions. Scraping entire websites for hours on end does not really seem to add anything to the research process. I argue that indiscriminately copying digital data is not even research. My argument against this process is more than It s too time cons uming and difficult to analyze. The main reason I am now against this practice is that most of the data I gathered was not even theoretically important to my study. Gathering so much data, just to protect against the data disappearing, or somebody asking about my results, or missing something in the analysis, does not seem justified. What results from this data collection process are potentially hundreds or even thousands of examples of the same type of data; saturation can be reached even a few hours int o data collection. This saturation that I am speaking of, though, is different from what is called theoretical saturation: digital data collection methods can lead to a practical saturation that is different than theoretical saturation. When qualitative re searchers speak of theoretical saturation, they mean that enough data has been
256 collected so that most of the nuanced perspectives about an issue or phenomenon can be analyzed. If, when analyzing data, a researcher can no longer develop the themes in questi on, when adding new data does not add anything to the discussion, the project is said to be theoretically saturated. Digital data collection methods can amass so much data from even one or two online communities that a researcher can reach the practical li mits of what s/he can study given resource restraints, even though theoretical saturation has not been reached. This does not mean that data should never be copied: blog posts should still be copied in their entirety, hundreds or thousands of comments sho uld still be gathered, and videos should still be watched. But if I did this again, I would keep my research questions much closer to the forefront of my mind and avoid indiscriminately gathering data. In the future, I will use the following methodology f or studying online communities: 1. I would start by identifying several communities that are theoretically important to study. In my case, I studied 13 communities, supplemented with my experience of my own community. For this study, that was a reasonable num ber of communities, which provided me with breadth of data and diversity of voice. 2. I would then observe and copy relevant data starting with one community. I would save links to all of that community s platforms and social networks. Then I would read throu gh as much existing material as I could, copying material which I intended to look at later in more detail. I would write field notes about patterns I observed, including in my notes hyperlinks to specific pages of interest. This process of reading through a community s existing material should take place over one week to keep the timeline of data collection manageable. 3. In the next week, I would repeat the same process in step 2 with a second community. I would also add one step: go back to the first commun ity and observe and record anything of importance that had developed in the previous week only; in other words, only new material that I had not observed yet.
257 4. In week 3, I would repeat step 2 with a third community. Then, I would go back to communities 1 a nd 2 and record my observations about anything relevant to my research questions that happened within this week. In this way, I would continue this process over the course of 3 6 months, analyzing a new community each week, reading through that community s archives, and then updating my observations about new events or developments in the other communities I had already studied. At some point, in about three months time, I will have analyzed all communities in depth at least once. From then on for several more months I would only look at new material that developed, checking each community once a week. This research process would accomplish several goals. First, I would have a better chance of gathering theoretically useful data. I would likely still have hundreds, maybe thousands, of pages of data and observations, but the dataset would be smaller, and more meaningful, than the dataset I had for this present study. Second, by following up with each community every week, I would be better able to track how communication develops over a period of time. Third, if something changes in a community, or if the community is deleted entirely during the period of study, at least I would have some record of what that community was like: not a complete record, but a r ecord useful for my research purposes. Other researchers have suggested similar data capturing techniques as a way of organizing digital data. Kautsky and Widhold (2008), for instance, discussed the difficulty of collecting data about online news stories, considering that online news stories are frequently updated, making it problematic for researchers who want to study one definitive version of the article. They proposed a methodology called Regular -
258 Interval Content Capturing, which gets at a similar id ea: return to the same content over time to see what changes. Practical Applications While this study has much importance to health communication and digital media researchers, the results also have practical implications for medical professionals, patien ts, and caregivers. First, medical professionals stand to benefit not only from learning how patients discuss their illness and how they treat it, but by contributing to these communities as time affords. While it is true that there can be hostility toward medical professionals in the online IBD community, many people are very happy with their doctors, surgeons, and nurses. One primary criticism of medical professionals from my population was that some medical professionals do not spend enough time educatin g patients, discussing treatment options, or working with them to find a treatment that fits their lifestyle. Of course, medical professionals could ignore social media and not have to confront tricky issues about conflict with patients, but at what cost? While patients do share a lot of health information in online communities, some of it general knowledge about IBD, often they ask very specific questions about complications, interactions between drugs, the validity of alternative treatments, or if they s hould be worried about a particular symptom. While there might be somebody in the online community who can answer these questions based on personal experiences, sometimes finding that person who has experienced something so specific is difficult. Medical p rofessionals, though, have an advantage that patients do not: not only are medical professionals educated in medicine, but perhaps more importantly, they have a breadth of experience treating other patients. They stand a better chance at answering
259 such spe cific questions than patients do. Medical professionals also have better access to the latest research, and thus can inform patients about new studies. When it comes to patient participation in these communities, I believe the benefits far outweigh any ne gatives in terms of conflict between other members. While there can be misinformation in the online community, if patients are given a little education about health literacy, they can be better protected against misinformation. Medical professionals, in co nsultation with communication professionals and practitioners, could develop guidelines to assist patients in discerning what type of patient led communities are useful and which are unhelpful. Such guidelines could likely apply to other chronic conditions as well. Some suggestions I plan to share with my support group include: Find sites with active communities: people stand a better chance of getting their questions answered. Look for people who speak honestly about their health experiences, the good and the bad. People who only talk about the beneficial aspects of a treatment, especially an alternative treatment, might not be telling the whole story. Be wary of people who push one idea or treatment and do not consider other possibilities, especially if th ey are trying to sell something. Be careful reading old content, especially content that is several years old. Not only might the health information have become outdated, but the person telling the story likely has had new health experiences in the interve ning time. Do not hesitate to contact community members or leaders directly. Many of them are willing to answer people s questions if asked. Confirm any health information with multiple sources, both patient sources and professional sources. Discuss with y our doctor new treatment ideas or changes to your current treatment before you act upon it. Finally, caregivers can also find patient communities helpful, whether caregivers are spouses, romantic partners, parents, or friends. A caregiver does not need to be
260 somebody who takes care of the person with IBD regularly: most patients do not need that. But most people with IBD do need help from time to time. People with IBD, though, often have a hard time discussing their disease with others; paradoxically those closest to the person with IBD might have the least knowledge about how the disease affects the person s life. Even if a caregiver does not participate in an online community, at least by reading others stories, s/he will not only learn medical informati on about the disease, but also will learn how IBD really affects people. If a caregiver does have a question, s/he should be encouraged to reach out to the online community. The people in the online community are generally glad to answer questions from car egivers. Final Words Throughout this study I have revealed much about how these online communities function, and how people with IBD use new media technology to discuss health, create online spaces, and manage their disease. As new media technology evolve s, so, too, must this line of research. I thank the reader for sticking with me to the end, and I thank the online IBD community for their generous assistance in the completion of this dissertation. The work of the people involved in the online IBD communi ty lays sturdy ground for people newly diagnosed with IBD, for researchers of digital technology, and for a more expansive and comprehensive online community in the future.
261 APPENDIX A MY PERSONAL STORY Whenever I explain inflammatory bowel disease to peo ple, I usually give a short, clinical definition of the disease what part of the body it affects, the main symptoms, and how it is treated similar to the introduction of this dissertation. I ha ve characterized the disease in this way hundreds of times. Thi s Cliff Notes descript ion of the disease works when I ha ve told friends, family members, coworkers, strangers, and students about the disease. When I tell people about the disease verbally, I often give an objective description of the disease in about 30 seconds, sometimes shorter if it is apparent they are not interested. Even though it is clear in my mind how this disease works , and I try to explain it as simply as possible, I often have to correct misconceptions, or explain things in another way so tha t people get it. For instance, many people have heard of irritable bowel syndrome (IBS), but IBS and IBD are completely different diseases that unfortunately have a very similar acronym (IBD is far more debilitating than IBS). Unfortunately, people often do not grasp the significance of the disease when it is presented in this distanced manner . So let me explain the disease a different way: My junior year of college I had persistent stomach pain over spring break. When I got back to school, I saw a doctor and was prescribed a short course of medicine. I do not even remember what it was. The medicine did not help. For several months, I was in and out of the doctor s office and underwent many tests, from simple blood tests to more invasive tests: x rays, rect al exams, ultrasounds, and finally a colonoscopy. All the while, my stomach pain worsened to diarrhea, and gradually I was going to the bathroom more often. Finally, in June 2007 I was diagnosed with ulcerative colitis. I was
262 told that my entire colon was inflamed ( called pancolitis ) and that the disease was incurable. The doctor, though, was not too concerned. She said that there were a variety of medicines to use, medicines that suppressed my immune system so that the autoimmune response in my colon turned off. She prescribed me the medication Asacol , and my parents promptly made an appointment with doctors at Mayo Clinic to get a second opinion. I traveled to Mayo two months later, and during this time, my symptoms worsened. Once we arrived in Roch ester, Minnesota, we had a few hours to spare, so my parents and I went to Menards, a regional hardware store , to look at some cabinets they ha d just purchased for the ir kitchen remodel. The cabinet section was all the way in the back of the store. Once my mom and I got there, I realized I had to go to the bathroom, and now! I asked my mom where the bathrooms w ere and immediately we looked for signs pointing the way. Often bathrooms are in the back of big box stores. Not this time. We quickly made our way t oward the front, speed walking, as running would ha ve looked awkward in a public place. The bathrooms were at the entrance doors, but before we even got to the cash registers, I stopped. This is when I learned what urgency meant. My mom turned around to ask what was wrong. I said in a near whisper, I didn t make it. What? I didn t make it, I repeated. Then she understood. It was a strange feeling, losing complete control of my bowels. No amount of clenching or holding back
263 helped. Immediately I felt the diarrhea dribble down my legs: fortunately I was wearing jeans. My mom gave me her jacket and I wrapped it around my waist. I made it to the bathroom where my dad was waiting. As I walked, I constantly looked over my shoulder, worried that I wa s leavin g a trail on the concrete floor or that somebody would smell me as I passed by . Once in the safety of the handicapped stall, I methodically cleaned myself up with thin tissue paper. I probably flushed the toilet 15 times because I used so much pap er. My dad waited patiently, and fortunately nobody else was in the bathroom. When I finished, I threw my underwear in the trash, washed my hands, then embraced my dad, finally crying after 20 minutes of stoically dealing with the mess. The next day when we saw the doctor, we explained that my medicine was not working and that we needed something more powerful. My dad said in low tones that I ha d had an accident in public yesterday. The doctor nodded, said that accidents happen sometimes, and moved on. I w ould learn time and again over the years that doctors rarely asked about the lived experience of the disease. They were and frequently are concerned about quantifiable symptoms : how many bowel movements was I having a day? How many times was blood present? How did I rate my pain on a scale of 1 to 10 with 1 being no pain and 10 being the worst pain? The doctor did prescribe me more medicine, but as soon as I got home from Mayo Clinic, my flare up worsened. I had an accident in Target, all over the bathroom floor, this time with nobody to help me. If I could have lasted one more second I could have made it to the toilet. I left the store without any idea of how to clean up that mess, and I ha ve always felt sorry for whoever found it. I had accidents in the m iddle of the
264 night, again within sight of the toilet . Another time when the urge came up, I found the bathroom occupied by a roommate, who I had not yet told about the disease as I did no t fu lly understand it myself. I did no t want to barge into the bathro om while he showered. I contemplated using the k itchen sink, decided that would no t be polite to my roommates, and settled for squatting over an empty laundry basket, holding a plastic supermarket bag to contain the mess. Right before my senior year of co llege I was hospitalized for four days because of the flare up. The day I went into the emergency room I went to the bathroom 16 times, my record at the time (the new record is 25 times in one day) . Then in November that year, I was hospitalized for 12 day s. During that time, I did no t eat anything and was put on total parenteral nutrition (TPN), which i s a nutritional supplement that i s taken intravenously. I missed Thanksgiving, and my grandma died during that hospital stay. I was put on a last resort med ication , which staved off my symptoms for six months, but as soon as I graduated college I had surgery to remove my colon, almost exactly one year after my diagnosis. I lived with an ileostomy for six months and later had a J pouch constructed. The J pou ch is made from my small intestine and replaces my rectum so I can now go to the bathroom normally, though the stool is always liquid (since there is no colon to absorb water). I go to the bathroom 5 7 times a day, 0 2 times at night, and that i s about the best I can do. I have probably gotten a full night s rest 20 times in the last 2,400+ nights since being diagnosed. But now I have control and no urgency. In 2012, though, I started having flare ups again and was diagnosed with chronic pouchitis ( inflamm ation of my J pouch). In the beginning my pouchitis was treated with
265 antibiotics, but we discovered that m y chronic pouchitis has an autoimmune cause, so I now take IBD medication again to manage the disease. Surgery is sometimes said to be a cure for ulce rative coli tis (WebMD, 2011), and for three years I did no t take any IBD medication, as my disease was said to be cured. But now I have this condition called autoimmune pouchitis (which sounds made up, I know), which requires me to take IBD medicine ag ain, so really I a m nearly back to where I started when I was diagnosed with the disease, minus a colon. If I have time, and if people are interested, this i s how I explain what IBD is. It i s an uncontrollable, unpredictable disease that manifests itself differently in people. Many people have had far more benign experiences with the disease than me . Some take mild drugs and do no t see another symptom for 20 years. Others have the disease far worse than me: some experience more hospitalizations, more surge ries, and more complications, sometimes requiring life saving blood transfusions because of the amount of blood they lose. Finding and Providing Support Online A few weeks before my first surgery, my dad sent me links to YouTube videos that featured indiv iduals with ulcerative colitis explaining their disease history and experience with surgery. The videos were about 10 minutes long and walked viewers through the person s entire experience from diagnosis to colectomy to living with a J pouch. I found it fa scinating and very comforting knowing there were others out there who have experienced what I did. At this point, I had never met another person with IBD. After my second surgery, this one to construct the J pouch, I was still living with an ile ostomy (th e J pouch was dormant for three months while it healed from surgery). I
266 had lived with an ostomy for three months already and learned through trial and error how to change the bag, empty it, clean leaks, and how to wear it under my clothes so that it was n o t visible. I decided to make a few videos about how to manage the ostomy and posted them on YouTube. In college my friends and I had messed around with YouTube and video editing for a few years, so I had a general idea of what I wanted to do. I also start ed a blog to share my videos with a wider audience. I did not, however, anticipate the response I got . Hundreds, and then thousands, and then tens of thousands watched my videos. They asked me questions, both in the public comment area and through private message about how my disease had been diagnosed, how I was feeling now, what my experience had been with this or that medication , how does this procedure work, had I experienced this complication, and more. Every question became a new video idea. When I s tarted UCVlog.com (The Ulcerative Colitis Vlog back then, then the United Colon Vlog), I really only had ideas for about eight videos. But over several years, I made nearly 200 videos . Some of these videos have been translated into Spanish, German, Catalan , Japanese, and Hebrew by people in foreign countries. I had a Facebook support group and partnered up with a young woman with Crohn s disease to provide another prospective. She created another hundred videos for the website. We also collected more than $ 60,000 worth of unused ostomy and medical supplies, which were distributed by medical teams in Third World countries, particularly Haiti following the 2010 earthquake. T hrough posting my videos, I stumbled upon an online community for inflammatory bowel disease that I never knew about that first year I lived with the
267 disease. I went through the worst of the disease without ever knowing or talking to another person with the disease, and while the support from my family, friends, and coworkers was very m uch needed and helpful, it did no t always compare with talking with somebody who already knew what I was experiencing. My Current Situation Whenever I tell people what I have been through in the past, they are often surprised at the severity of my illness. I have had three surgeries, four hospitalizations due to flare ups and complications, and 12 emergency room visits. I have spent 40 nights in the hospital, have had six scopes and colonoscopies, dozens of x rays, CT scans, and MRIs, and have experimented wi th at least 25 different medications. Bills have been in the tens of thousands (and would probably be a couple hundred thousand without insurance). But when people look at me, they either say directly or imply more politely, You look fine now. Partially . I have just gotten better at hiding the disease. My pouchitis started acting up two and a half years ago, almost immediately after I started the PhD program. I have tried many new medications to get it under control. Currently I take steroids, a short te rm solution that has kept my disease manageable. But some semesters I really wondered if I would have to take a medical withdrawal. I am out of medication options: eventually I have to get off the steroids. I am currently waiting for a new drug to hit th e market: who knows how effective that will be? The problem with new drugs is that they mostly test them for safety, not efficacy. At most drugs undergo clinical trials for 6 12 months to see if they are effective. But this disease will be with me my entir e life: what happens two or three years down the road? How long will the new drug be effective if it works? And when it stops working which
268 every drug has done for me will there be another new drug on the market for me to try? And if that drug stops worki ng, what is next? I could either experiment with myriad alternative therapies, like special diets, supplements, acupuncture, or herbal medicine. While some people with IBD swear by them, there is little clinical evidence that these treatments are effective . The next step would be surgery to remove my inflamed J pouch, going back to an ileostomy, this time permanently. I am not bothered by the prospect of a permanent ostomy: at one point I really thought I would have to have surgery during graduate school. I simply do not like the idea of putting my life on hold for weeks at a time while I recover from surgery. And even if I have surgery, certain problems will be alleviated, but new complications can arise. I have listened to enough stories from people with I BD to know that the disease can strike when I least expect it. During the data collection for this dissertation, my website partner Nadia and I made the decision to stop supporting UCVlog.com. We had been doing it for five years, and after hundreds of vid eos and blog posts, and answering thousands of comments and emails from audience members, we simply ran out of things to say. We each still struggle with our health, but at this point, we experience more of the same, nothing really new that we can inform our viewers about. So we announced in December 2013 that we would not be creating new content for UCVlog, and eventually we will take down our existing content. Medical information goes out of date, and we do not want people to see our old stuff and get t he wrong impression about the disease or even our current situation.
269 APPENDIX B INTERVIEW GUIDE FOR COMMUNITY LEADERS The following semi structured interview guide was used with leaders of IBD online communities. Before community leaders were interviewed , their videos, websites, blogs, Twitters, Facebook pages, and other online media were examined, as questions were tailored to the specific content they produce. Opening . Thank you for agreeing to participate in this interview. Did you get a chance to re ad through the informed consent document I emailed to you? [If not, the informed consent document will be read to participants.] I just want to reiterate two things about informed consent: First, you are free to share as much information or as little infor mation about your life and disease as you want. As you may know, I have ulcerative colitis myself and am active in the online community, so I won t be grossed out if you tell me intimate details of your disease. However, if there is any question you don t want to answer, you don t have to. Second, I want to talk to you about privacy and confidentiality. Normally when we do interviews like this, we hide participants identities as much as possible, using pseudonyms and not publishing any contact information for the people we interview. However, for this project that will be a little harder to do, because, as you know, there aren t many people with IBD online who operate their own YouTube channels, Facebook groups, and blogs. Even if I used a pseudonym, it mi ght still be possible for people to trace back your responses to your website. Do you mind if I use your first name and connect your answers to your web addresses, or would you rather I keep your identity as private as possible?
270 Question 1 . Before we sta rt talking about your websites and videos, can you tell me a little bit about your disease? I ve been following your videos and websites for a while, so I have some idea of how your disease has progressed over the years, but I want to hear from you the sto ry of your disease. Possible follow up: When were you diagnosed with your disease? How did you feel when you were diagnosed? Did you know anybody with the disease before you were diagnosed? Did you have any support from your friends or family? How are y ou feeling now? What has been most difficult about living with your disease? Question 2 . Tell me about your websites and YouTube videos. Possible follow up: Why did you start telling your story online? Why do you continue telling your story online? Wh at do your friends and family think about you telling your story online? Do they know? If not, why do you keep it from them? Question 3 . Tell me about the response you ve gotten from your viewers and readers. Possible follow up: Did you expect this re sponse from people? What has surprised you the most about how people have responded? Have you gotten any negative responses from people online?
271 Have you gotten any negative responses from people offline? What kind of comments do people typically leave? Wha t do people talk to you about when they email you? Have you made any personal connections with any of your viewers or readers? How many of your viewers and readers are from other countries? Question 4 . How do you define your role as somebody who is dissem inating health information and building a community? Do you have any responsibilities to the people who watch and read your content? As a leader? As a role model? Possible follow up: How much do you think people trust you? How important is it to give peo ple accurate information? How do you decide the accuracy of health information? Has there ever been a time when somebody has put too much trust in you or relied on you too much? Have you ever posted information that you later learned was inaccurate? How di d you handle that? Question 5 . We ve been talking a lot about the community of people who follow your websites. As you may know, there are several non profits who try to build communities for people with bowel diseases both offline and online, such as the Crohn s and Colitis Foundation of America (CCFA) and the United Ostomy Associations of America (UOAA). How do you see your work in relation to the work those non profits are doing? Possible follow up: What sort of things are you doing that they can t do? Are you fulfilling an unmet need for people involved in these non profits?
272 Is there anything you can do better than a non profit like the CCFA? Question 6 . We ve talked about your relation to other community building organizations like the CCFA and U OAA. Now let s talk more about the medical and health information you provide. How do you see your work in relation to medical professionals and the medical establishment? Possible follow up: How is the information you provide different from the informat ion people get from their doctors? Are there ever cases in which you feel that there s a conflict between what doctors tell patients and the information you provide? How does your work support the work of doctors and medical professionals? How have medical professionals like doctors or nurses reacted to your work? Have you told your doctor and care team about the work you do online? Question 7 . What are the challenges of creating and supporting an online community of people with IBD? Possible follow up: How do you maintain a community when peo ples disease activity is often cyclical in nature (oscillating between flare up and remission, or suffering with the disease pre surgery and relief from the disease post surgery)? Are there any technical challenges to putting your content online? How much time and effort does it take to maintain your community? How is your work challenged when you aren t feeling well yourself? Does it ever get overwhelming the number of people who respond to your content and seek you r help? Does your online work ever cause problems for you offline? At school? At work? With family and friends?
273 Question 8 . Do you mind if I use some of your pictures online in my write up? Is it okay if I take screen captures of some of your videos to us e in my report? Question 9 . Community leader specific questions. Throughout the interview, community leaders talked about their specific projects and websites, especially as many of them were doing unique things in their community that others were not doi ng. Questions about their specific projects were sometimes formed prior to the interview and used as back up questions in case they did not address their projects in the normal flow of the interview.
274 APPENDIX C SURVEY GUIDE FOR AUDIENCE MEMBERS OF IBD COM MUNITIES The following questions composed an open ended online survey administered to audience members of online IBD communities. The survey was created in Qualtrics. The survey recruitment letter was posted on Facebook groups by some community leaders, a nd some community leaders posted the recruitment letter on their websites or blogs. Question 1. Age If they were under 18 years of age, the survey ended. Question 2. Sex Question 3. Disease Crohn s disease Ulcerative colitis Indeterminate inflammatory bowel disease Still in the process of diagnosis I do not have inflammatory bowel disease If they said they do not have the disease, the survey ended. Question 4 . When did you first experience symptoms of your disease? (month/year) Question 5 . When you were diagnosed with your disease? (month/year) Question 6 . Have you had surgery for your disease? If so, describe your surgery or surgeries. Question 7 . Which IBD websites do you visit regularly or have you visited regularly in the past? If possible, li st the URL (website address), or list the name of the website. You can also list blogs, YouTube channels, Facebook support groups, Twitter pages, or any other type of IBD website you visit regularly.
275 Question 8 . What do you find helpful about these websit es? Feel free to share as much as you like. Question 9 . Is there anything about these websites in general, or particular websites, that are not as helpful as you d like? Feel free to share any criticisms you have of the online community. Question 10 . H ave you ever contacted an IBD website owner/creator through email, private message, or other form of communication? Describe these interactions in as much detail as you can. You do not need to use all of the space provided. Question 11 . How has the online IBD community affected the management of your disease? These effects may be positive or negative. Question 12 . Describe any support you receive for your disease offline. Support can be from family members, coworkers, friends, doctors, or anybody else im portant in your life. Question 13 . Have you ever felt stigmatized because of your disease? If so, please describe these experiences in as much detail as you can. Question 14 . Have you ever felt like you have not received the kind of support you need fr om others? If so, please describe these experiences in as much detail as you can. Question 15 . Would you be interested in participating in a short interview, either over the phone or through Skype, about your experiences in the online IBD community? If so , please provide an email address so that I can contact you for further information. Because of time constraints, not everybody who agrees to an interview will be interviewed. People will be selected for follow up interviews based on the uniqueness of
276 thei r health experiences, their relevance to the project s goals, and the possibility that they might be able to offer additional insight into the phenomena under investigation.
277 APPENDIX D RECRUITMENT EMAILS AND INFORMED CONSENT Recruitment E mail S ent to Comm unity Leaders Dear PERSON, I am a doctoral student at the University of Florida, and I am studying the online IBD community for my dissertation. As a person with IBD myself, this topic is very important to me. I maintain my own website and vlog (http://UC Vlog.com) and am studying how other people like you construct and maintain online communities. I am hoping you would be interested in participating in an in depth interview about the community you ve helped create for IBD patients. The interview would be take 60 90 minutes, and we would discuss why you started sharing your story online, how it has been received by your viewers, and what challenges you see in maintaining your community. The interview would be conducted either through Skype or over the phone , your choice. Of course, you wouldn t be required to answer any specific question you didn t want to answer. I will audio record the interview so that I can make sure I know exactly what you said. Let me know if this is something you would be willing to do. Your community is very interesting, and I d like to know the inside story about how it got started and why you do what you do. I ve attached an informed consent document for you to look at. Before conducting the interview, I will need verbal confirmat ion that you agree to participate in this study.
278 If you are interested, please email me some times that work within the next week or two for us to talk. My schedule is very open. If you have any questions at all about this study, please let me know! Since rely, Dennis Frohlich University of Florida 701 541 3608
279 Informed C onsent for the O pen E nded I nterview with Community Leaders Please read this consent document carefully before you decide to participate in this study. Purpose of the research study The p urpose of this study is to understand how the online IBD community functions. I am curious how these communities are constructed and maintained and how viewers and readers react to the work of other persons with IBD. What you w ill be asked to do in the stu dy You will be asked to participate in one phone or Skype interview. During the interview, you will be asked about your disease and what you have experienced with IBD. You are free to share as much or as little information as you want. You will then be as ked about your work online why you started sharing your story, how others have reacted to your story, and how you see yourself in relation to the medical establishment. Time required 60 90 minutes Foll ow up interviews If clarification is needed regardin g your answers, or if any concerns arise during the course of the research, you may be contacted through email for a follow up interview, conducted via email, phone, or Skype depending on the nature of the question. Risks and Benefits There are no risks, psychological or to your body, associated with this study. We do not anticipate that you will benefit directly by participating in this study. A copy of the final report will be available should you request one.
280 Compensation There is no compensation for p articipating in this research. Confidentiality Normally, researchers promise to keep participants identities confidential to the extent provided by law. This usually means that your personal information, contact information, and medical information will be kept solely by the researcher, and that your name and identifying characteristics will not be used in any report. Rather, your story is shared in a confidential manner so that no response can be traced back to you. As you may know, there are relativel y few people with IBD online sharing their stories. Even if a pseudonym was used when quoting your responses (which is the standard procedure), it might still be possible for people to uncover your identity. Instead, I am asking to use your name and refer to your websites directly in any report or publication produced with this data. Any identifying characteristics used in a report will only use information that you have already provided publicly, such as the name you use online and your web addresses. If , on the other hand, you do not want your name and websites referenced directly in any report, your identity will be protected as much as possible and pseudonyms will be used. Again, it will not be possible to fully protect your identity this way as there are relatively few people such as yourself in this online community. If you provide permission to use your name and web addresses in a report or publication, your other personal information, such as your contact information, will not be used. The audio fr om the interview will be recorded to ensure accuracy of quotations, but these audio files will not be shared with anybody. Audio files and
281 transcripts of the interview will be kept on a secure computer that only the researcher has access to. All electronic data from the interviews will be kept until the research results have been published, after which time they will be properly destroyed. Voluntary participation Your participation in this study is completely voluntary. There is no penalty for not particip ating. R ight to withdraw from the study You may withdraw from the study at any point, including during the interview, without consequence. You also can choose not to answer any question you do not want to answer. Whom to contact if you have questions abo ut the study Principle Investigator: Dennis Owen Frohlich, Graduate Student at the University of Florida, College of Journalism and Communication, Division of Graduate Studies, PO Box 118400, Gainesville, FL 32608. Phone: (701) 541 3608. Email: Dennis.Frohlich@ufl.edu Faculty Supervisor: Kim Walsh Childers, Ph.D. , firstname.lastname@example.org , 352 392 3924 Whom to contact about your rights as a res earch participant in this study IRB02 Office, PO Box 112250, University of Florida, Gainesville, FL 32611 2250. Phone: (352) 392 0433
282 Agreement By participating in a phone or Skype interview, you agree that you have read this document. You agree that you have voluntarily decided to participate in this study and that you have received a copy of this informed consent.
283 Recruitment M essage P osted on Facebook P ages S oliciting R esponses from A udience M embers (This message was posted only with permission from the people who op erate the Facebook page. This message need ed to be shorter than other recruitment messages as shorter Facebook posts are more effective than longer ones). Hello everybody! I am a graduate student at the University of Florida, and also somebody with ulcera tive colitis. For my dissertation, I m conducting a research study on how the online IBD community is created and maintained, and how viewers and readers like you use these websites. I m looking for people 18 or older to complete a short survey about your activity in the online community. As long as you have IBD, you are eligible to participate; it doesn t matter how long you ve had IBD or how bad your disease is. The survey will take approximately 10 15 minutes. Please click the link below to access the s urvey. Thanks for your invaluable help! Please be aware that Facebook maintains identifiable records of your actions while on Facebook, including any response to this message or click on the survey link, and may use that information for various purposes. ~Dennis Frohlich [link to survey]
284 Recruitment M essage P osted on IBD B logs S oliciting Responses from Audience Members (This message was posted only with the permission from the people who operate the blog) Hello everybody! I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog ( http://UCVlog.com ), which you may be familiar with. For my dissertation, I m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I m looking for people 18 or older to complete a short survey about your activity in the online community. As long as you have Crohn s disease or ulcerative coli tis you are eligible to participate; it doesn t matter how long you ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you ve had surgery, you are still eligible. The survey will take approximately 10 15 minutes. Please click the link below to access the survey. Thanks for your invaluable help! [link to survey] If you have any questions at all, please let me know. Sincerely, Dennis Frohlich Uni versity of Florida email@example.com
285 Informed C onsent for the O pen E nded S urvey with A udience M embers Please read this consent document carefully before you decide to participate in this study. Purpos e of the research study The purpose of this study is to understand how the online IBD community functions. I am curious how these communities are created and how viewers and readers with IBD use these communities. What you w ill be asked to do in the study You will be asked to complete one open ended survey. You will be asked about your experiences with IBD websites, how you search for information online, and what makes IBD websites trustworthy. Time required 10 15 minutes Risks and Benefits There are no risks, psychological or to your body, associated with this study. We do not anticipate that you will benefit directly by participating in this study. A copy of the final report will be available should you request one. Compensation There is no compensati on for participating in this research. Confidentiality The information you provide will remain confidential, and only the research team will have access to your answers. If your answers are quoted during any final write up or report, a pseudonym will be used to protect your identity. Your contact information will not be shared with anybody else.
286 Data Security Your survey answers will be recorded and stored electronically. There is a minimal risk that security of any online data may be breached, but becau se Qualtrics (the company hosting the survey) uses high end firewalls and other security measures, and because your data will be removed from the server soon after you complete the survey, it is unlikely that a security breach of the online data will resul t in any adverse consequence for you. If you d like to know more about Qualtrics security policy, please click here ( http://www.qualtrics.com/security statement/ ). Voluntary participation Your participation in this study is completely voluntary. There is no penalty for not participating. R ight to withdraw from the study You may withdraw from the study at any point without consequence. You also can choose not to answer any specific question yo u don t want to answer. Whom to contact if you have questions about the study Principle Investigator: Dennis Owen Frohlich, Graduate Student at the University of Florida, College of Journalism and Communication, Division of Graduate Studies, PO Box 118400 , Gainesville, FL 32608. Phone: (701) 541 3608. Email: Dennis.Frohlich@ufl.edu Faculty Supervisor: Kim Walsh Childers, Ph.D. , firstname.lastname@example.org , 352 392 3924
287 Whom to contact about your rights as a res earch participant in this study IRB02 Office, PO Box 112250, University of Florida, Gainesville, FL 32611 2250. Phone: (352) 392 0433 Agreement By participating in this survey, you agree that you have read thi s document. You agree that you have voluntarily decided to participate in this study and that you have received a copy of this informed consent.
288 APPENDIX E DESCRIPTION OF ONLINE IBD COMMUNITIES For this project I examined 13 online IBD communities. Thes e communities are described in fuller detail in the results chapters. This appendix serves as a quick reference on the demographic details of the community leaders that I interviewed and a breakdown of which social media platforms each community utilized. All participants gave me permission to use their names in this report (and in one case, the screen name she is known by) as well as link to their websites. Adam Scheuer. Male, age 35, ulcerative colitis for 6 years. Community name: iHaveUC Platforms uti lized: https://www.facebook.com/ihaveuc https://plus.google.com/114418537510684204408/posts http://w ww.ihaveuc.com/ https://twitter.com/ihaveuc http://www.youtube.com/user/ihaveuc Andrea Meye r . Female, age 31, Crohn s disease for 13 years. Community name : The Great Bowel Movement (non profit). Andrea is one of several community leaders. Platforms utilized: https://www.facebook.com/TheGreatBM http:/ /www.flickr.com/photos/93789310@N02/ http://thegreatbowelmovement.org/ https://twitter.com/TheGreatBM http://w ww.zazzle.com/thegreatbm Fernpixel (chosen screen name). Female, age undisclosed, ulcerative colitis for 9 years.
289 Community name : No community name, websites branded under the Fernpixel name. Platforms utilized: http://fernpixel.blogspot.com/ http://new.spring.me/#!/user/fernpixel/timeline https://twitter.com/fernpixel http://www.youtube.com/user/fernpixel Heidi Skiba . Female, age 41, ulcerative colitis for 14 years. Community name : Ostomy Outdoors Platforms utilized: http://www.faceb ook.com/OstomyOutdoors http://ostomyoutdoors.com/ https://twitter.com/OstomyOutdoors http://www.youtube .com/user/ostomyoutdoors Jackie Zimmerman . F emale, age 28, ulcerative colitis for 4 years. Community name : Girls With Guts (non profit). Jackie is one of several community leaders. Second community: Blood, Poop and Tears Platforms utilized for Girls W ith Guts: http://www.facebook.com/IBDgirls http://www.girlswithguts.org/ https://twitter.com/IBDgirls http://vimeo.com/girlswithguts http://www.youtube.com/user/IBDGirlsWithGuts Platforms utilized for Blood, Poop and Tears: http://www.bloodpooptears.com/ http://www.facebook.com/bloodpooptears https://twitter.com/Jackiezimm http://www.youtube.com/user/ExcuseMyDust14 Jason McIntosh . M ale, age 36, Crohn s disease for 16 years.
290 Community name : Awestomy (for profit company) Platforms utilized: http://www.awestomy.com/ https://plus.google.com/112628264041373876709/posts https://www.facebook.com/awestomy http ://www.pinterest.com/awestomy/ https://twitter.com/awestomy Jeffrey Levin . M ale, age 40, Crohn s disease for 27 years. Community name : A Guy with Crohn s Platforms utilized: http://aguywithcrohns.com/ http://www.facebook.com/BathroomTalk http://www.pinterest.com/javajay73/ https://twitter.com/JavaJay73 http://www.youtube.com/user/AGuyWithCrohns Kelly Fricke . F emale, age 23, disease activity for 10 years, diagnosed with Crohn s 2 years ago. Community name : Co mmunities branded under the personal name Kelly Patricia, Diary of a Sick Girl, or Finding Strength Through Pain. Platforms utilized: http://www.etsy.com/shop/HandfulOfHope https://www.facebook.com/FindingStrengthThroughPain https://plus.google.com/117174345687526706131/posts http://instagram.com/its_kellaaay http://iotabetadelta.webs.com/ http://sickgirldiary.tumblr.com/ http s://twitter.com/StrongerNowXO https://www.youtube.com/user/Kellbear27 Lauren Erbach . F emale, age 28, Crohn s disease for 9 years. Community name : Forward is a Pace
291 Platforms utilized: https://www.facebook.com/forwardisapace http://www.forwardisapace.com/ http://instagram.com/laurenerbach https://twitter.com/forwardpace Maggie Baldwin . F emale, age 20, Crohn s disease for 8 years. Community name : Let s Talk IBD Platforms utilized: http://www.etsy.com/ shop/mayslove http://www.facebook.com/pages/Lets Talk IBD/173363562736069 http://iotabetadelta.webs.com/ http://letstalkibd.webs.com/ http://www.stomawise.co.uk/maggie/ https://twitter.com/LetsTalkIBD http://www.youinspire.org/users/LetsTalkIBD http://www.youtube.com/user/LetsTalkIBD Michael Weiss . M ale, age 50, Crohn s disease for 30 years. Community name : Communities branded u nder the personal name Michael Weiss or the screen name Hospital Patient. Non profit portion of the community called Crohn s Disease Warrior Patrol. Platforms used for Michael Weiss s personal content: http:/ /hospitalpatient.com/ https://twitter.com/HospitalPatient http://hospitalpatient.tumblr.com/ http://vimeo.co m/user4136594 http://www.youtube.com/user/HealthcareInterview/videos http://www.youtube.com/user/HealthCareReality/v ideos http://www.youtube.com/user/ProPatientTV/videos http://www.youtube.com/user/TheMedicalMinute/videos Platforms used for Crohn s Disease Warrior Patrol: http://crohnsdiseasewarriorpatrol.org/ http://www.pinterest.com/crohnsibdpatrol/cdwp/
292 https://twitter.com/CrohnsIBDPatrol http://www.youtube.com/crohnsibdpatrol Stephanie Hughes . F emale, age 27, Crohn s disease for 13 years. Community name : The Sto len Colon Platforms used: https://www.facebook.com/thestolencolon https://plus.google.com/+StephanieHughes/posts http://www.linkedin.com/in/stephaniemlhughes http://www.pinterest.com/shughesies/ http://stolencolon.com/ https://twitter.com/smlhughes http://www.youtube.com/user/smlhughes
293 APPENDIX F SCREENSHOTS OF IBD COMMUNITIES This chapter contains screenshots from each of the 13 communit ies investigated in this project. Screenshots are used with permission from the community leaders. Figure F 1. iHaveUC website, retrieved from http://www.ihaveuc.com/
294 Figure F 2. The Great Bowel Movement t sh irts being worn in public, retrieved from http://thegreatbowelmovement.org/
295 Figure F 3. Fernpixel giving her audience an update and asking for their questions for a future video, retrieved from https://www.youtube.com/user/fernpixel
296 Figure F 4. Heidi showing how she manages her ostomy while rock climbing, retrieved from https://www.yout ube.com/user/ostomyoutdoors
297 Figure F 5. Girls With Guts website, retrieved from http://www.girlswithguts.org/
298 Figure F 6. Blood, Poop & Tears website, retrieved from http://www.bloodpooptears.com/
299 Figure F 7. Awestomy Kickstarter campaign to raise money for new product development, retrieved from https ://www.kickstarter.com/projects/964686420/awestomy ostomy apparel with attitude
300 Figure F 8. Twitter account of Jeffrey from A Guy With Crohn s, retrieved from https://twitter.com/JavaJay73
301 Figure F 9. Kelly s Tumblr account, retrieved from http://sickgirldiary.tumblr.com/
302 Figure F 10. Lauren s Instagram account, retrieved from http://instagram.com/la urenerbach#
303 Figure F 11. Maggie demonstrating how to change an ostomy appliance, retrieved from http://www.youtube.com/user/LetsTalkIBD
304 Figure F 12. Michael Weiss website, retrieved from http://hospitalpatient.com/
305 Figure F 13. Facebook page for The Stolen Colon, retrieved from https://www.facebook.com/thestolencolon
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319 BIOGRAPHICAL SKETCH Dennis Fr ohlich was born in North Dakota and completed his B achelor of S cience at North Dakota State University in 2008, majoring in Journalism, Broadcasting, and Mass Communication Tec hnologies. He then completed his M aster of S cience at NDSU in 2011, majoring in Mass Communication. He received his Doctor of Philosophy in Mass Communication from the University of Florida in the summer of 2014.
TheSocialDimensionofBlogging aboutHealth:HealthBlogging,Social Support,andWell-beingStephenA.Rains&DavidM.KeatingThestudyreportedhereexploredthesocialdimensionofhealth-relatedblogsby examiningbloggingasameanstomarshalsocialsupportand,asaresult,achievesome ofthehealthbenefitsassociatedwithsupportivecommunication.Atotalof121 individualswhoauthorablogdedicatedtotheirexperiencelivingwithaspecifichealth conditioncompletedthestudyquestionnaire.Thenumberofblogpostsmadeby respondentsandproportionofpostswithreadercommentswerepositivelyassociated withperceivedsocialsupportfromblogreaders.Therelationshipbetweenblogreader supportandtwooutcomesrelatedtowell-beingdependeduponthesupportavailablein bloggersÂ’strong-tierelationshipswithfamilyandfriends.Consistentwiththesocial compensation(i.e.,Â‘Â‘poorgetricherÂ’Â’)perspective,blogreadersupportwasnegatively associatedwithlonelinessandpositivelyassociatedwithpersonalgrowthwhensupportin strong-tierelationshipswasrelativelylacking. Keywords:Blog;SocialSupport;HealthCommunication;CommunicationTechnology Thedevelopmentandwidespreaddiffusionofnewcommunicationtechnologies madepossiblebytheInternethashadseveralnoteworthyimplicationsforhealth communication.Oneimportantimplicationinvolvesincreasingaccesstoand facilitatingtheexchangeofsocialsupport(Cummings,Sproull,&Kiesler,2002; Wright&Bell,2003).Socialsupport,anumbrellatermthatgenerallyreferstothe linkbetweenoneÂ’swell-beingandrelationshipswithothers(Albrecht&Goldsmith, 2003;Goldsmith,2004),isassociatedwitharangeofpositivehealthoutcomes includingbenefitsforphysiologicalfunctioning(Uchino,2004)andpsychosocial StephenA.Rains(PhD,UniversityofTexasatAustin)isAssociateProfessorintheDepartmentof CommunicationattheUniversityofArizona.DavidM.Keating(BA,UniversityofArizona)isanMAstudent intheDepartmentofCommunicationatMichiganStateUniversity.Theauthorswouldliketothanktheeditor andtwoanonymousreviewersfortheirhelpfulfeedbackaswellasthehealthbloggerswhoservedas respondentsandmadethisprojectpossible.Correspondenceto:StephenRains,DepartmentofCommunication,UniversityofArizona,Tucson,AZ85721-0025,USA.E-mail:email@example.comISSN0363-7751(print)/ISSN1479-5787(online) # 2011NationalCommunicationAssociation http://dx.doi.org/10.1080/03637751.2011.618142CommunicationMonographs Vol.78,No.4,December2011,pp.511 534
well-being(Smith,Fernengel,Holcroft,Gerald,&Marien,1994).Althoughseveral studieshavebeenconductedtoexaminesupportivecommunicationinthecontextof computer-mediatedsupportgroups(forareview,seeRains&Young,2009;Tanis, 2008),othercommunicationtechnologiessuchashealth-relatedjournalspostedto web-logs(i.e.,blogs)mightserveasaresourceandhaveuniqueimplicationsfor marshallinginformationandemotionalsupport.Bloggingisafundamentallysocial activity(Nardi,Schiano,&Gumbrecht,2004;Stefanone&Jang,2008)inwhich individualsmaydiscusspubliclytheirconcerns,insights,andexperienceslivingand copingwithahealthcondition(Miller&Pole,2010;Sundar,Edwards,Hu& Stavrositu,2007).Healthblogshavethepotentialtoserveasameansofacquiring socialsupportandfosteringatleastsomeofthehealthbenefitsassociatedwith supportivecommunicationandrelationships. Thestudyreportedhereexploresthesocialdimensionofhealth-relatedblogging byexaminingtherelationshipsamonghealthblogging,socialsupport,and psychosocialwell-being.Twoobjectivesarecentraltothisproject:First,bloggingis examinedasapossiblemechanismthroughwhichindividualsmarshalsocialsupport andachievesomeofthehealthbenefitsofsupportivecommunication.Healthblogs makeitpossibletoreinforceconnectionswithexistingstrongtiesandformnew connectionswithweakties.Moreover,normativeelementsofthebloggenreand technicaldimensionsofblogsmaycreateopportunitiesforbloggersandblogreaders tomanagesomeofthefaceworkdilemmasthatareinherentinsupportive interactions.Theassociationbetweenhealthblogging(e.g.,postfrequency,mean wordswrittenperpost,etc.)andperceivedsocialsupportavailablefromblog readersisexamined,asistherelationshipbetweenblogreadersupportandoutcomes relatedtopsychosocialwell-being(e.g.,loneliness,socialfunctioning,healthselfefficacy,etc.). Second,theimplicationsofsupportfrombloggers Â’ strong-tierelationshipswith familyandfriendsareconsidered.Researchexaminingweaktiesassupportresources (Adelman,Parks,&Albrecht,1987;Wright&Miller,2010)andtheconsequencesof newcommunicationtechnologyuseforsocialconnectionandwell-being(Bessiere, Kiesler,Kraut,&Boneva,2008;Krautetal.,2002)suggeststhattheavailabilityof supportfrombloggers Â’ strongtiesmayhaveimportantimplicationsfortheoutcomes ofhealthblogging.Bloggingmightdifferentiallybenefitsomeindividualsbasedon theavailabilityofsupportfromtheirfamilyandfriends.Twoperspectivesaretested tobetterunderstandtheimplicationsofstrong-tiesupport.Thesocialenhancement (i.e., Â‘Â‘ richgetricher Â’Â’ )perspective(Krautetal.,2002)suggeststhatthoseindividuals whohaverelativelygreaterlevelsofsupportfromfamilyandfriendsavailableare mostlikelytoachievesupportandhealth-relatedbenefitsfromblogging.Thesocial compensation(i.e., Â‘Â‘ poorgetricher Â’Â’ )perspective(Krautetal.,2002)proposesthat bloggingwillbemostbeneficialtothoseindividualslackingsupportfromfamilyand friends. Throughexaminingbloggingasameanstomarshalsupportresourcesandthe commensuratehealthbenefitsofsupportivecommunication,thisprojectadvances researchandtheoryaboutnewcommunicationtechnologies,socialsupport,and512S.A.Rains&D.M.Keating
health.Bloggingisanovelcontextinwhichtostudysocialsupportandsomeofthe opportunitiescreatedbycommunicationtechnologiesthatmightfacilitatesupportivecommunication.Examininghealthbloggingalsooffersanavenuetoexplorethe interrelationshipbetweenstrongandweaktiesassupportresourcesandtheir implicationsforwell-being.Inthefollowingsections,wediscussresearchrelatedto socialsupportandhealthandthenconsidertheimplicationsofhealthbloggingfor socialsupportandpsychosocialwell-being. LiteratureReview SocialSupportandHealth Socialsupportreferstocommunicationthatservestohelpmanageuncertaintyand increaseperceptionsofcontrolregardingone Â’ slife(Albrecht&Adelman,1987a; Albrecht&Goldsmith,2003).Twoofthemostwidelycitedexplanationsforthe potentialhealthbenefitsofsocialsupportarethebufferingmodelandthemaineffect model(forareview,seeCohen&Wills,1985).Thebufferingmodelfocusesonthe roleofsocialsupportasamediatorbetweenastressfuleventandastressresponse, whereasthemaineffectmodelisconcernedwiththewaysinwhichmembershipina socialnetworkmayimproveanindividual Â’ soverallwell-beingandbetterenablethe individualtomanagestressfulevents.Althoughseveraldifferenttypesofsupportand commensuratesupportivemessageshavebeenclassified(Cutrona&Suhr,1992; House,1981;Willis,1985),thisprojectfocusesonsocialsupportintheformof informationandemotionalsupport.Informationsupportinvolvesadvice,factual input,andfeedbackregardingone Â’ sactions;emotionalsupportconsistsofmessages thatcommunicatecaring,concern,sympathy,andempathy(Cutrona&Suhr,1992). Emotionalandinformationsupportwerethemostcommontypesofsupport documentedinatleasttwostudiesofcomputer-mediatedsupportgroups (Braithwaite,Waldron,&Finn,1999;Mo&Coulson,2008). Theimplicationsofvarioussourcesofsocialsupporthavealsoreceivedattention inresearchexaminingsocialnetworksandsupportivecommunication(forareview, seeAlbrecht&Adelman,1987b;Albrecht&Goldsmith,2003).Strong-tierelationshipsconsistingoffamilyandfriendsareaprimarysourceofsocialsupport(Albrecht &Adelman,1987b;Albrecht&Goldsmith,2003;Griffith,1985).Socialsupportfrom familyandfriendscanbe butisnotalways(e.g.,Coty&Wallston,2010) a particularlyimportantresourceduringillnessandhasbeenlinkedwithimprovementsinwell-beingrangingfromincreasedhealthself-efficacy(Arora,Finney Rutten,Gustafson,Moser,&Hawkins,2007)toreducedloneliness(Serovich, Kimberly,Mosack,&Lewis,2001)anddepression(Metts,Manns,&Kruzic,1996). Inadditiontofamilyandfriends,weakties(Granovetter,1973,1982)suchas neighborsandotheracquaintancesareanotherpotentialsupportresource.Adelman etal.(1987,p.126)discussweaktiesinthecontextofsocialsupportas Â‘Â‘ supporters wholiebeyondtheprimarynetworkoffamilyandfriends, Â’Â’ includingpeoplewhose networksdonotoverlapsubstantially,havelowlevelsofinterdependence,andSocialDimensionofHealthBlogging513
interactonlyinlimitedcontexts.WrightandMiller(2010)arguethat,relativeto strongties,weaktiesaremorelikelytosharesimilarexperienceswithahealth condition,offergreaterobjectivity,presentlessriskassociatedwithselfdisclosure, andhavefewerroleobligationsandsocialcomplications.Thewidespreaddiffusionof communicationtechnologiesfacilitatedbytheInternethasmadeitpossibleto reinforceconnectionswithstrongties(Stafford,Kline,&Dimmick,1999;Stefanone &Jang,2008)andincreaseaccesstoweakties(Tanis,2008;Wright&Bell,2003; Wright,Rains,&Banas,2010). HealthBloggingandSocialSupport Itisestimatedthat8%ofadultInternetusers totaling12millionAmericans authorablog(Lenhart&Fox,2006).Blogsaregenerallydefinedas Â‘Â‘ web-based journalsinwhichentriesarepublishedinreversechronologicalsequence Â’Â’ (Herring, Scheidt,Bonus,&Wright,2004,p.1).Blogsmayalsocontainanarchiveofprevious entries,aspacewherereaderscanmakecomments,andlinkstootherblogsthatthe authorpresumablyfollows(i.e.,ablogroll)(Schmidt,2007).Althoughseveralgenres ofblogshavebeenidentified(Herringetal.,2004),thisprojectfocusesonblogsthat serveaspersonaljournalswrittenbyanindividualcopingwithahealthcondition. Researchconductedonhealth-relatedblogsgenerally(Miller&Pole,2010)and mental-healthblogsspecifically(Sundaretal.,2007)suggeststhatblogsfocusingona singleindividual Â’ sexperiencewithahealthconditionareamongthemostcommon typeofhealth-relatedblogs. Animportantcharacteristicofbloggingisthatitisafundamentallysocialactivity (Nardietal.,2004;Stefanone&Jang,2008).Abloghasanaudiencewho,insome cases,maybeabletoprovidedirectfeedbacktotheauthorinthecommentsportion oftheblog,throughemail,orevenface-to-face(Stefanone&Jang,2008;Sundar etal.,2007).Inpubliclysharingone Â’ sexperiencewithandinsightsaboutone Â’ shealth condition,itisplausiblethatbloggingisusedasameanstomarshalsocialresources suchassocialsupport(Miller&Pole,2010;Schmidt,2007;Sundaretal.,2007). Indeed,MillerandPole(2010,p.1516)explainthefindingsfromtheirsurveyof healthbloggersbysuggestingthat Â‘Â‘ healthblogsarebeingused,inpart,toforge supportnetworksamongbloggersandtheirreaders. Â’Â’ Theorizingaboutweakties(Granovetter,1973,1982;Wright&Miller,2010)and theroleoffaceworkinsocialsupport(Goldsmith,1992,1994)suggestsatleasttwo reasonsthatbloggingmightserveasamechanismtomarshalsocialsupportfrom bothstrongandweaktiesand,asaresult,fosterpositiveoutcomesforbloggers Â’ well-being.First,blogsmaymakeitpossibletoidentifyandconnectwithstrongand weaktieswhoaremotivatedtoprovideinformationandemotionalsupport. Asignificantchallengeofacquiringsupportinstrong-tierelationshipsismanaging concernsforsocialequityandthepotentialtooverburdensupportproviders (Albrecht&Adelman,1987a;Goldsmith,2004).Sharinginformationinablog reducesthepotentialburdenonanysinglememberofone Â’ sstrong-tienetwork. Theaudienceforblogsisundifferentiatedinthatblogsaretypicallynotwrittenforor514S.A.Rains&D.M.Keating
toanysingleaudiencemember(Gurak,2008) thoughtheremaybeexceptions (Nardietal.,2004).Unlikeaface-to-faceconversation,anindividualblogreaderhas noobligationtoenactorfeignsupport.Membersofablogger Â’ sstrong-tienetwork canchoosetonotleaveacommentand/or,whentheyinteractwiththebloggerfaceto-face,notmentiontheblog.Blogsalsomakeitpossibletoconnectwithweakties whomaynotpersonallyknowtheblogger,butarecopingorhavecopedwiththe samehealthcondition.Weaktiesareanovelresource(Granovetter,1973,1982)and, inthedomainofhealth,mayrepresentanalternativetosupportfromstrongties (Wright&Miller,2010).Weaktiesprovideaccesstonewinformation,facilitatesocial comparison,andofferalower-riskoutletforselfdisclosure(Adelmanetal.,1987; Wright&Miller,2010).Asabroadcastmediumthathasthepotentialtobereadbya numberofpeople(Nardietal.,2004;Trammell&Keshelashvili,2005),blogsmaybe ausefulmechanismforincreasingone Â’ saccesstoweakties.Thepublicrecordofone Â’ s experiencescreatedthroughbloggingmayserveasabeacontoweaktieswithsimilar historieswhoaremotivatedtoprovideinformationandemotionalsupport. Second,technicalandnormativedimensionsofbloggingmightcreateopportunitiesforsupportseekersandproviderstomanagefaceconcernsandhelpmitigate someofthedilemmasthatcharacterizetheacquisitionandprovisionofsocial support.Goldsmith(1992,1994)usespolitenesstheoryandthenotionoffacework (Brown&Levinson,1987)asaframeworktobetterunderstandsomeofthe competinggoalsthatpresentchallengesduringsupportiveinteractions.Shecontends thatpositiveandnegativefacethreatsmayoccurintheprocessofseekingand providingsupport.Positivefaceinvolvesone Â’ spositiveself-image(Brown& Levinson,1987)andmaybethreatenedifsupportseekersdiscloseundesirable informationorifsupportprovidersappearuncaringorunabletoprovidesufficient support.Negativefaceinvolvesone Â’ sautonomy(Brown&Levinson,1987)andcan bethreatenedifsupportprovidersfeelburdenedbyhavingtoprovidesupportorif supportseekersfeelcompelledtocomplywithadvicefromsupportproviders. Blogsareanasynchronousformofcommunicationinwhichmanyofthe nonverbalcuesavailableinface-to-faceinteraction(e.g.,eyecontact,gesture,etc.)are absentorreduced.Thesetwofeaturesmaycreateopportunitiesforbloggers(as supportseekers)andblogreaders(assupportproviders)tomitigatepositiveface threats.Bloggershavetheopportunitytoconsidertheirmessagesbeforesharingthem andpresenttheircircumstancesinthebestlightpossible.Theabilitytosharetheir experiencewithouthavingtomakeeyecontactorwitnessthenonverbalresponsesof supportprovidersmayalleviateembarrassmentassociatedwithdisclosingundesirableinformation particularlyinthecaseofstigmatizedhealthconditions.The asynchronousnatureofblogsmakesitpossibleforreaderstoreviewanentirepostor seriesofpostspriortoresponding.Blogreadersmaybeabletolearnagreatdeal aboutablogger Â’ sexperiencesanddevelopanunderstandingofwhatmightbe consideredanappropriatelyface-sensitivesupportivemessage.Theopportunityfor asynchronousinteractionandreducedsocialcuesmayalsohelpmitigatenegative facethreats.Bloggersmaynotfeelcompelledtocomplywithadviceorsuggestions fromblogreadersandblogreadersmaynotfeelobligedtoprovidesupportandpostSocialDimensionofHealthBlogging515
acommentinresponsetoablog.Beyondthesetwotechnicaldimensions,thegenre ofbloggingmakesappropriateextensiveselfdisclosure(Herringetal.,2004;Qian& Scott,2007).Sundaretal.(2007,p.85)explainthatblogs Â‘Â‘ allowlongnarrativesand aregenerallyconsideredaforumforpersonalcommentary. Â’Â’ Bloggerscandiscuss theirexperiencesandneedsatlengthwithoutviolatinggeneralconversationalnorms associatedwithselfdisclosureandappearingsociallyincompetent.Together,the technicalandnormativedimensionsofbloggingmayfacilitatesupportiveinteractionsbyallowingbloggersandblogreaderstomanagefaceconcernsthatmake seekingandprovidingsupportchallenging. HypothesesandResearchQuestions Theprecedingdiscussionprovidesafoundationforonesetofhypothesesandoneset ofresearchquestionsregardinghealthblogging,socialsupport,andwell-being.The setofhypothesesconsiderstherelationshipbetweenhealthbloggingandsocial supportfromblogreadersaswellastherelationshipbetweensocialsupportfrom blogreadersandhealthoutcomesrelatedtowell-being.Thesetofresearchquestions focusesontheroleofstrong-tiesupportfromfamilyandfriendsasamoderatorof theprecedingrelationships. HealthBlogging,SocialSupport,andWell-Being. Bloggingmaybeameansfor marshallingsocialsupportfromblogreaders.Beyondmakingitpossibletoreinforce orincreaseaccesstostrongandweakties,technicalandnormativedimensionsof bloggingmayhelpbloggersandblogreaderstoeffectivelymanagesomeofthe faceworkdilemmasinherentinacquiringandprovidingsocialsupport.Accordingly, bloggingabouthealth-relatedissuesispredictedtobepositivelyassociatedwith perceivedsocialsupportfromblogreaders(potentiallyconsistingofbothstrongand weakties).Individualswhoblogmorefrequentlyandwhosepostsgeneratemore readerresponsesshouldgenerallyperceivemoresupportfromblogreaders.In particular,bloggingfrequency,meanwordswrittenperpost,meanreaderresponses perpost,andthetotalproportionofpostswitharesponseshouldallbepositively associatedwithperceivedsocialsupportfromblogreaders.H1:Perceivedsocialsupportfromblogreadersispositivelyassociatedwith(a) bloggingfrequency,(b)wordsperblogentry,(c)uniquereadercommentsper entry,and(d)proportionofentrieswithatleastonereadercomment.Moreover,someofthehealthbenefitsofsupportivecommunicationmightextend toperceivedsocialsupportacquiredfromblogreaders.Informationandemotional supportshouldfunctiontoincreasebloggers Â’ knowledgeaboutmanagingahealth conditionandhelpmakethemfeelcaredforandunderstood.Assuch,blogreader supportshouldbeassociatedwithhealthbenefitsforbloggers.Priorresearchdemonstratesthat,inthecontextofcopingwithillness,socialsupportisassociatedwith increasedhealthself-efficacy(Aroraetal.,2007),reducedloneliness(Serovichetal.,516S.A.Rains&D.M.Keating
2001),andincreasedsocialfunctioninginvolvingthedegreetowhichone Â’ shealth interfereswithsocialactivities(Aalto,Uutela,&Aro,1997).Inadditiontothese factors,itseemsplausiblethatblogreadersupportcouldplayanimportantrolein bloggers Â’ outlookontheirlifeduringorwithillness.RyffandSinger(1998)contend thatfeelingasenseofpurposeinlifeandpersonalgrowthareessentialelementsof well-being.Duringsignificantlifeeventssuchascopingwithillness,thesetwofactors mayactivatephysiologicalprocesses(e.g.,immunefunctioning)centraltomaintainingorprotectingphysicalhealth.Informationandemotionalsupportfromblog readersmayimproveablogger Â’ soutlookandhelphimorherfeelasenseofgrowth andpurposeinlifeduringillness.Insummary,blogreadersupportshouldbe positivelyassociatedwithbloggers Â’ healthself-efficacy,socialfunctioning,senseof purposeinlife,andfeelingofpersonalgrowthandnegativelyassociatedwith loneliness.H2:Perceivedsocialsupportfromblogreadersispositivelyassociatedwith perceptionsof(a)healthself-efficacy,(b)socialfunctioning,(c)purposein life,and(d)personalgrowthandnegativelyassociatedwith(e)loneliness.TheImplicationsofStrong-TieSupport. Bloggingisarguedtobeanovelmeansof acquiringsocialsupportbecauseitcreatesopportunitiestoreinforceexisting connectionswithstrongtiesandtocreatenewconnectionswithweakties.Yetit seemsplausiblethattheoutcomesofbloggingmaybedependentuponthe availabilityofsupportfrombloggers Â’ strongties.Althoughstrongtiessuchasfamily andfriendsareinstrumentalsupportresources(Albrecht&Adelman,1987b; Albrecht&Goldsmith,2003),thereareinstances particularlyinthecontextof health whenstrongtiesmaybeunableorunwillingtoprovideeffectivesupport (Adelmanetal.,1987;Wright&Miller,2010).Moreover,researchexaminingtheuse ofInternet-basedcommunicationtechnologiestoacquiresocialresources(Kraut etal.,2002;Lee,2009;Valkenburg&Peter,2007;Zywica&Danowski,2008)and fosterimprovementsinwell-being(Bessiereetal.,2008)hasfoundevidence consistentwiththeideathatthesocialandhealthoutcomesofInternetuseare dependentuponthequalityofone Â’ sexistingstrong-tierelationships.Inthiswork, twoperspectivesareadvancedtoexplainhowexistingstrong-tierelationships influencetheoutcomesofInternetuse.Thesocialenhancementandsocial compensationperspectivesserveasausefulfoundationfromwhichtoexaminethe implicationsofstrong-tiesupportforhealthblogging. Thesocialenhancement(i.e., Â‘Â‘ richgetricher Â’Â’ )perspective(Krautetal.,2002) suggeststhatindividualswhohaveaccesstorelativelygreaterlevelsofsupportfrom strongtiesmaybenefitmostfromhealthblogging.Thisperspectiveisfoundedonthe notionthatindividualswho Â‘Â‘ haveexistingsocialsupportwillgetmoresocialbenefit fromusingtheInternet Â’Â’ (Krautetal.,2002,p.58).Amongindividualswhohave satisfactorysupportfromfamilyandfriends,Internet-basedtechnologiesmightbea meanstoreinforcetheirexistingrelationshipsandmakenewconnectionsthatmight serveasadditionalsupportresources.BlogsrepresentamechanismforinformingSocialDimensionofHealthBlogging517
existingstrongtiesaboutone Â’ sillnessaswellasexpandingone Â’ snetworkbyadding newweak-tiemembers.Incontrasttothesocialenhancementperspective,thesocial compensation(i.e., Â‘Â‘ poorgetricher Â’Â’ )perspective(Krautetal.,2002)suggeststhat peoplewholacksupportfromstrongtieswouldmostbenefitfromhealthblogging. Throughmarshallingsupportfromblogreaders,itmaybepossibletoovercome supportdeficitsfromstrongtiesand,thus,achievehealthbenefitsassociatedwith supportivecommunication.Indeed,insufficientstrong-tiesupporthasbeenargued tobeonefactormotivatingtheuseofcomputer-mediatedsupportgroupstoaccess weakties(Tanis,2008;Wright&Bell,2003;Wrightetal.,2010). Theprecedingdiscussionsuggeststhatthequalityofstrong-tiesupportavailable fromfamilyandfriendsmightmoderatetherelationshipbetweenhealthblogging andperceivedsupportfromblogreadersaswellastherelationshipbetweenblog readersupportandhealthoutcomesrelatedtowell-being.Becausethesocial enhancementandsocialcompensationexplanationsfortheimplicationsofstrong-tie supportareequallyplausible,thefollowingthreeresearchquestionsareproposed. Answeringthesequestionswillmakeitpossibletobetterunderstandthe consequencesofstrong-tiesupportfromfamilyandfriendsforhealthblogging.RQ1:Doesarelationshipexistbetweenperceivedsupportfromblogreadersand perceivedsupportfromfamilyandfriends? RQ2:Doesperceivedsupportfromfamilyandfriendsmoderatetherelationships betweenperceivedsocialsupportfromblogreadersand(a)blogging frequency,(b)wordsperblogentry,(c)uniquereadercommentsperentry, and(d)proportionofentrieswithatleastonereadercomment? RQ3:Doesperceivedsupportfromfamilyandfriendsmoderatetherelationships betweenperceivedsocialsupportfromblogreadersand(a)healthselfefficacy,(b)socialfunctioning,(c)purposeinlife,(d)personalgrowth,and (e)loneliness?Method SamplingProcedureandRespondents Anextensivesearchwasconductedtoidentifyindividualswhoauthorapersonaljournaltypeblog(Herringetal.,2004)focusingontheirhealth.Ageneralgoal guidingtherecruitmentofrespondentswasidentifyingasampleofbloggersas representativeasreasonablypossibleofthepopulationofindividualswhoarecoping withaphysicalormentalhealthconditionandactivelybloggingabouttheir experienceswiththatcondition.Twogeneralstrategieswereusedtolocatethesample forthisproject. ThefirststrategyinvolvedusingGoogleandYahoo! Â’ ssearchenginestosearchfour popularblog-hostingwebsitesusing22differentsearchphrases.Blogspot.com, wordpress.com,typepad.com,andlivejournal.comarefourofthemostpopularbloghostingwebsitesusedbyAmericans(Lenhart&Fox,2006)andwerethefocusofthe searchesconductedforthisproject.Eachofthesefourwebsitesmakesauthoringa blogaccessibletopeoplewholackwebsitedesignorprogrammingknowledge.Each518S.A.Rains&D.M.Keating
searchwaslimitedtoblogspostedononeofthefourblog-hostingwebsitesthatwere writteninEnglishandupdatedinthepreviousfewmonths. Twenty-twodifferentsearchphraseswereusedtoconductthesearches.Fiveterms generallyrelatedtohealthwereusedtoensurethatarangeofhealthconditionswas representedinthesample:disease,condition,disability,illness,anddisorder. ToensurethathealthconditionscommonintheUnitedStateswererepresented, sixsearchtermsthatrefertospecificconditionswerealsoused:heartdisease,cancer, Alzheimer Â’ s,diabetes,depression,andHIV.Theformerfourconditionsareamong themostcommoncausesofmortalityfromillnessintheUnitedStates(Centersfor DiseaseControlandPrevention,2009);thelattertwoconditionsaresimilarly commonandserioushealthconcerns(Beck&Alford,2009;Harmon,Barroso,Pence, Leserman,&Salahuddin,2007).Eachofthese11termsreferringtohealthingeneral ortoaspecificconditionwasthenpairedwithtwodifferentqualifiers(i.e.,living with;dealingwith)toformthe22searchphrases(e.g., Â‘Â‘ livingwith Â’Â’ and Â‘Â‘ disease; Â’Â’ Â‘Â‘ dealingwith Â’Â’ and Â‘Â‘ cancer; Â’Â’ etc.). GoogleandYahoo!searcheswereconductedexaminingthefourbloghosting websitesusingthe22searchphrases.Intotal,176uniquesearcheswereconducted. Eachsearchhadthepotentialtoyieldupto1000results.Toexpeditetheblogidentificationprocess,100oftheblogsresultingfromeachofthe176searcheswere randomlyselectedandreviewed.Blogswereincludedinthesampleiftheymetthe followingthreecriteria:(1)authoredbyanindividualcopingwithaspecifichealth condition,(2)focusedontheauthor Â’ sexperiencewiththecondition,and (3)updatedintheprecedingsixweeks.Atotalof253uniquehealthblogswere identified. Thesecondstrategyinvolvedusingthe253blogspreviouslyidentifiedtolocate additionalhealthblogs.Eachblogroll,whichisalistofotherblogsthattheblog authorfollowsorrecommends,fromtheoriginal253blogswasreviewedtoidentify additionalhealthblogsthatmetthestudycriteria.Thissamplingprocedureresulted in131additionalhealthblogs.Nosignificantdifferencesweredetectedbetweenthe twosamplesforanyofthepredictororoutcomesvariablesexaminedinthisproject. Together,thetwosearchstrategiesyielded384activehealthblogswrittenby individualscopingwithspecifichealthconditionsandfocusingontheirexperiences withthoseconditions.Alloftheblogsidentifiedcanbeconsideredpublicinthatthey werenotpasswordprotectedandwereavailabletoallpotentialreaders.Each blogauthorwascontactedandinvitedtoparticipateinthisproject.Atotalof121 respondentssufficientlycompletedtheweb-basedquestionnaire.1Respondentswere mostlyfemale( n 89,77%)andhadameanageof43.84years( SD 12.68). Approximately60%( n 78)oftherespondentsreportedhavingcompletedcollege ormoreeducation.Almostall( n 116)oftherespondentsreportedhavingbeen formallydiagnosedbyamedicaldoctorwiththehealthconditionaboutwhichthey blog.Respondentsreportedhavingandbloggingaboutoneormorephysicaland mentalhealthconditionsincluding(butnotlimitedto):Alzheimer Â’ sdisease, Asperger Â’ ssyndrome,bipolardisorder,cancer,eatingdisorders,fibromyalgia, depression,HIV,lupus,Lymedisease,multiplesclerosis,Parkinson Â’ sdisease,SocialDimensionofHealthBlogging519
rheumatoidarthritis,traumaticbraininjury,andType1diabetes.Respondents estimatedthatapproximately70%( SD 22.89)oftheirblogpostsfocusspecifically onissuesrelatedtotheirhealth.Respondentshadbeenwritingtheblogaboutwhich theycompletedthestudyquestionnaireforameanof1.88( SD 1.58)years. Instrumentation Unlessotherwisenoted,allmeasureswereratedonaseven-pointscalewiththe anchors Â‘Â‘ stronglydisagree Â’Â’ (1)and Â‘Â‘ stronglyagree Â’Â’ (7). Healthblogging. Allblogpostsmadebyeachrespondentduringthesixweeks (42days)priortocompletingthequestionnairewerereviewedbyoneoftheauthors. AllpostsweremadebetweenAprilandJulyof2010.Blogswerecodedbasedonthe totalnumberofposts(i.e.,bloggingfrequency)madeduringthe42dayperiod ( M 16.79, SD 17.00)andthemeannumberofwordswrittenperpost ( M 473.42, SD 279.37).Datawerealsocollectedregardingthebehaviorofeach respondent Â’ sblogreaders.Alloftheblogsallowedreaderstopostcomments;these commentswerereviewedtoidentifythemeannumberofuniqueblogreaderswho postedacommentperblogentry( M 1.95, SD 2.57)andtheproportionofblog entrieswithatleastonecomment( M 0.61, SD 0.33).Allrespondentsagreedto allowtheirblogstobereviewedforthisproject. Socialsupport. Themedicaloutcomessurvey(MOS)socialsupportsurvey (Sherbourne&Stewart,1991)wasusedtoevaluaterespondents Â’ perceptionsabout theavailabilityofsocialsupportfromblogreadersandtheirfamilyandfriends. Respondentsratedfouritemsevaluatingemotionalsupportandfouritems evaluatinginformationsupport.Ratingsofemotionalandinformationsupport werecombinedtocreateasingleindexofperceivedsupport.Becausethisproject focusesonsupportfromfamilyandfriendsaswellasfromblogreaders,respondents ratedthesupporttheyperceivedavailablefrombothgroups.Separateratingswere madeabouttheperceivedsupportavailablefromfamilyandfriends( M 5.67, SD 1.24, .93)andfromblogreaders( M 4.94, SD 1.31, .91). Measuresofwell-being.Loneliness wasassessedwiththefour-itemshortformofthe UniversityofCaliforniaatLosAngeles(UCLA)lonelinessscale(Hays&DiMatteo, 1987;Russell,Peplau,&Cutrona,1980)( M 2.79, SD 1.21, .79). Healthselfefficacy wasmeasuredusingfiveitemsadaptedfromLee,Hwang,Hawkins,and Pingree Â’ s(2008)researchthatevaluatethedegreetowhichrespondentsfeltthatthey couldpositivelyimpacttheirhealth( M 5.68, SD 0.97, .84).Thetwo-item socialfunctioning subscalefromtheMOSshort-form(Ware&Sherbourne,1992)was usedtoevaluatethedegreetowhichrespondentsfeltthattheirhealthcondition interferedwiththeirsocialactivitiesduringtheprecedingsixweeks.Becauseoneof520S.A.Rains&D.M.Keating
theitemswasratedonafive-pointscaleandtheotherwasratedonasix-pointscale, eachitemwasstandardizedandthemeanofthetwoitemswasthencomputed ( M 0.00, SD 0.94, .89);largerscoresforthismeasureindicateagreater amountofsocialfunctioning.Four-itemversionsofthe purposeinlife and personal growth subscalesfromRyff Â’ s(1989)measureofpsychologicalwell-beingwere completedbyrespondents.Thepurposeinlifesubscale( M 6.05, SD 1.05, .80)reflectsthedegreetowhichrespondentsfeltthattheirlifehasmeaning,and thepersonalgrowthsubscale( M 5.91, SD 1.07, .83)reflectsrespondents Â’ beliefsthattheyareevolvingandrealizingtheirpotential. ControlVariables. Fivecontrolvariableswereincludedinalloftheanalyses:age, gender,education,currenthealth,andpercentageofblogreaderswhowerefamily andfriends.Grantedpreviousresearchdemonstratingdifferencesinsocialsupport basedonage(e.g.,Segrin,2003)andgender(e.g.,Burrell,2002),thesevariableswere includedintheanalysesascontrolvariables.Themeanageofrespondents ( M 43.84, SD 12.68)waspreviouslyreportedaswasthepercentageofthesample thatwasfemale(77%).Educationwasincludedasacontrolvariablebecauseithas beenarguedtoplayanimportantroleinoutcomesofInternetuserelatedtohealth communication(Shim,2008).Educationwasassessedbyaskingrespondentstoself reporttheirhighestlevelofeducationcompletedonasix-pointscalerangingfrom Â‘Â‘ lessthanhighschool Â’Â’ (1)to Â‘Â‘ graduateschool Â’Â’ (6)( M 4.29, SD 1.30).Because respondents Â’ healthstatusatthetimethequestionnairewascompletedmighthave systematicallyinfluencedtheirperceptionsofsupportandthehealth-related outcomesevaluatedinthisproject,respondents Â’ self-reported currenthealth was assessedandincludedasacontrolvariable.Currenthealthwasmeasuredwitha singleitemevaluatingthedegreetowhichrespondentsperceivedtheirgeneralhealth tobe Â‘Â‘ verypoor Â’Â’ (1)or Â‘Â‘ verygood Â’Â’ (7)( M 3.98, SD 1.52).Finally,theresearch questionsaskabouttherelationshipbetweensupportfromone Â’ sfamilyandfriends andthesocialsupportderivedfromblogreaders.However,supportfromblog readerswasnotnecessarilyindependentoffamilyandfriendsupport;arespondent Â’ s familyandfriendsmayalsohavebeenblogreaders.Toaccountforthispossibility, respondentswereaskedtoestimatethepercentageoftheirblogreaderswhowere familyandfriends( M 23.67, SD 25.63).Thepercentageofblogreaderswhowere familyandfriendswasusedasacontrolvariable. Results PreliminaryAnalyses Priortotestingthehypotheses,thedatawerefirstscreenedforoutliersfollowing TabachnickandFidell Â’ s(2001)recommendations.Univariateoutlierswereidentified asthosevaluesthatexceedthemeanforagivenvariablebythreeormorestandard deviations.Univariateoutlierswereidentifiedforthefollowingthreevariablesrelated tohealthblogging:bloggingfrequency( n 1),meanwordswrittenperpost( n 1),SocialDimensionofHealthBlogging521
andmeannumberofuniquereaderscommentingperpost( n 3).Ineachinstance, theoutlyingcasewasreassignedavaluethreestandarddeviationsgreaterthanthe meanforthevariable.Onemultivariateoutlierwasidentifiedandexcludedfrom theanalyses.Thezero-ordercorrelationsfortheprimaryvariablesincludedinthe analysesaredisplayedinTable1. BloggingaboutHealthandBlogReaderSupport Hypotheses1a 1dpredictarelationshipbetweenhealthbloggingandperceived supportfromblogreaders.ResearchQuestions2a 2daskwhethersupportfrom familyandfriendsmoderatestherelationshipspredictedinHypotheses1a 1d.One hierarchicalregressionmodelwasconstructedtoaddresstheprecedinghypotheses andresearchquestions.BecauseResearchQuestions2a 2dinquireaboutan interactioneffect,thefourvariablesassessinghealth-relatedbloggingandperceived supportfromfamilyandfriendsweremean-centered(Cohen,Cohen,Aiken,&West, 2003).Theregressionmodelwasconstructedasfollows:Thefivecontrolvariables (i.e.,gender,age,education,estimatedpercentageofblogreaderswhowerefamily andfriends,andrespondents Â’ currenthealth)wereenteredinthefirstblockofthe model.Inthesecondblock,thefourvariablesassessinghealthblogging(i.e.,total blogposts,meanwordsperpost,meanuniquereaderscommentingperpost, proportionofpostswithatleastonereadercomment)wereentered.Perceived supportavailablefromfamilyandfriendswasenteredinthethirdblock.Inthe fourthblock,theinteractionbetweenthefourvariablesassessinghealthbloggingand Table1 Zero-orderCorrelationsforPrimaryVariablesIncludedintheAnalyses ( N 117 121)1234567891011 1.Blogreader support 2.Familyandfriend support .01 3.Totalblogposts.23*.01 4.Meanwordsper post .10.00 .20* 5.Unique commentsper post .15 .09.04.19* 6.Proportionof postswithatleast onecomment .24*.10 .03.24*.65* 7.Healthselfefficacy .10.27*.06 .08 .18* .06 8.Personalgrowth.20*.35*.19* .15 .07 .10.59* 9.Purposeinlife.03.31*.09 .17 .04 .04.49*.70* 10.Loneliness .12 .64* .08.21* .02 .15 .29* .43* .39* 11.Socialfunctioning.10.25* .11.08.03.12.34*.28*.19* .18** p .05.522S.A.Rains&D.M.Keating
perceivedsupportfromfamilyandfriendswasincluded.Perceivedsupportavailable fromblogreadersservedastheoutcomevariable. Theresultsoftheregressionmodel,whicharedepictedinTable2,providesome evidencethathealthbloggingisassociatedwithperceivedsupportfromblogreaders. Afteraccountingforthecontrolvariables,bloggingfrequencyandtheproportionof postswithatleastonecommentwerepositivelyassociatedwithperceivedsupport fromblogreaders.ThesefindingssupportHypotheses1aand1d.However,themean numberofwordsperpostandthemeannumberofuniquereaderresponsesperpost werenotassociatedwithperceivedsupportfromblogreaders.Hypotheses1band1c werenotsupported.TheresultsrelatedtoResearchQuestions2a 2dindicatethat perceivedsupportfromfamilyandfriendsdidnotmoderatetherelationships betweenanyofthemeasuresofhealthbloggingandperceivedsupportfromblog readers. BlogReaderSupportandBloggers Â’ Well-being Hypotheses2a 2epredictarelationshipbetweenperceivedsupportavailablefrom blogreadersandfivehealthoutcomesrelatedtowell-being:healthself-efficacy, perceivedsocialfunctioning,purposeinlife,personalgrowth,andloneliness. ResearchQuestions3a 3easkwhetherperceivedsupportavailablefromfamilyand friendsmoderatestherelationshipspredictedinHypotheses2a 2e.Grantedthe precedinghypothesesandresearchquestions,fiveseparatehierarchicalregression Table2 HealthBloggingandSocialSupportfromFamilyandFriendsasPredictorsof BlogReaderSupportb tR2 R2Block1:Controlvariables.11.11* Gender(female 0) .13 1.33 Age .24* 2.54 Education .10 1.02 Currenthealth.050.50 Proportionofreaderswhowerefamilyandfriends.080.85 Block2:Healthblogging.25.14* Totalposts.31*3.49 Meanwordsperpost .11 1.19 Uniquecommentsperpost .04 0.29 Proportionofpostswithatleastonecomment.23*1.95 Block3:Familyandfriendsupport .05 0.49.25.002 Block4:Interactions.26.003 Familyandfriendsupport Totalposts.040.44 Familyandfriendsupport Meanwordsperpost.030.34 Familyandfriendsupport Uniquecommentsperpost.0010.01 Familyandfriendsupport Proportionofpostswithatleast onecomment .04 0.29* p .05.AllvariablesinBlocks2 4aremean-centered.Outcomevariable Blogreadersupport.Model summary: F (14,96) 2.34, p .05.SocialDimensionofHealthBlogging523
modelsweretested.Allfivemodelswereidentical,withoneexception.Theoutcomevariablesusedinthefivemodelsconsistedofthefivehealthoutcomes identifiedinHypotheses2a 2e.Perceivedsupportfromfamilyandfriendsand perceivedsupportfromblogreadersweremean-centeredpriortobeingincludedin eachmodel(Cohenetal.,2003).Allfivemodelswereconstructedasfollows:Thefive controlvariables(i.e.,gender,age,education,estimatedpercentageofblogreaders whowerefamilyandfriends,andrespondents Â’ currenthealth)wereenteredin thefirstblockofthemodel.Perceivedsupportfromfamilyandfriendswasentered inthesecondblock,andperceivedsupportfromblogreaderswasenteredinthethird blockofthemodel.Theinteractionbetweenperceivedsupportfromfamilyand friendsandperceivedsupportfromblogreaderswasenteredinthefourthandfinal block. TheresultsforallfiveregressionmodelsaredepictedinTable3.Perceivedsupport fromblogreaderswasassociatedwithtwoofthefivehealthoutcomes.Blogreader supportwaspositivelyassociatedwithperceptionsofpersonalgrowthandhealthselfefficacy.Respondentswhoreportedgreaterperceptionsofblogreadersupport reportedgreaterhealthself-efficacyandpersonalgrowth.Thefindingregarding personalgrowth,however,isqualifiedbyasignificantinteractioneffect.Therewasa significantinteractionbetweenblogreadersupportandfamilyandfriendsupportfor personalgrowthandloneliness.Tointerpretthesetwointeractions,theassociations betweensupportfromblogreadersandbothhealthoutcomeswerecomputedbased onthreedifferentlevelsofsupportfromfamilyandfriends(Cohenetal.,2003). Estimateswerecomputedatonestandarddeviationabovethemeanforfamilyand friendsupport,onestandarddeviationbelowthemeanforfamilyandfriendsupport, andatthemeanforfamilyandfriendsupport.Theresultsforpersonalgrowthand lonelinessaredisplayedinFigures1and2,respectively.Theyindicatethatthe relationshipsbetweenblogreadersupportandpersonalgrowth( b .42, t 3.80, p .05)andloneliness( b .33, t 3.06, p .05)weresignificantlydifferentfrom zerowhenfamilyandfriendsupportwasrelativelylow.Whenfamilyandfriend supportwasrelativelyhigh,however,therelationshipsbetweenblogreadersupport andpersonalgrowth( b .03, t .25, p .81)andloneliness( b .01, t .09, p .92) werenotsignificantlydifferentfromzero.Insum,whenfamilyandfriendsupport wasrelativelylacking,blogreadersupportwasnegativelyassociatedwithloneliness andpositivelyassociatedwithfeelingsofpersonalgrowth. Overall,theresultsprovidesomeevidenceconsistentwithHypotheses2band2d. However,nosupportwasfoundforHypotheses2a,2c,and2e.InregardtoResearch Questions2a 2e,theresultsdemonstratethatperceivedsupportfromfamilyand friendsmoderatestherelationshipsbetweenblogreadersupportandbothpersonal growthandloneliness.Consistentwiththesocialcompensationperspective,blog readersupportwasnegativelyassociatedwithlonelinessandpositivelyassociatedwithpersonalgrowthwhensupportfromfamilyandfriendswasrelatively lacking.524S.A.Rains&D.M.Keating
Table3 BlogReaderSupportandFamilyandFriendSupportasPredictorsofHealthOutcomesHealthself-efficacy Social functioningPurposeinlifePersonalgrowthLoneliness b t R2b t R2b t R2b t R2b t R2Block1:Controlvariables.18*.48.13*.10*.06 Gender(female 0) .18* 1.96.050.70 .20 2.19 .15 220.127.116.11 Age.050.57.020.31.111.22 .02 0.19 .02 0.24 Education.151.72.060.91.24*18.104.22.168 .002 0.03 Currenthealth.37*4.15.68*9.64.18*1.98.27*2.93 .01 0.12 Proportionofreaderswhowerefamilyand friends .151.76.070.95.141.52.070.78 .16 1.74 Block2:Blogreadersupport.18*1.98.03*.111.56.01.101.10.01.23*2.45.05* .13 1.36.02 Block3:Familyandfriendsupport.27*3.21.07*.30*4.53.08*.32*3.63.10*.36*4.20.12* .66* 9.03.40* Block4:Blogreadersupport Familyandfriend support .13 1.48.02.030.48.001 .09 0.97.01 .23* 2.61.05*.17*2.29.03** p .05.AllvariablesinBlocks2 4aremean-centered.Modelsummaries:healthselfefficacy, F (8,105) 5.51, p .05, R2 .30;socialfunctioning, F (8,105) 17.47, p .05, R2 .57;purposeinlife, F (8,105) 4.19, p .05, R2 .24;personalgrowth, F (8,105) 5.97, p .05, R2 .31;loneliness, F (8,105) 13.19, p .05, R2 .50.SocialDimensionofHealthBlogging525
BlogReaderSupportandSupportfromFamilyandFriends ResearchQuestion1asksifthereisanassociationbetweensupportfromfamilyand friendsandblogreadersupport.Aregressionmodelwasconstructedtoanswerthis researchquestionwithblogreadersupportservingastheoutcomevariable.Thefive Figure2 Familyandfriendsupportmoderatestherelationshipbetweenblogreader supportandpersonalgrowth. Figure1 Familyandfriendsupportmoderatestherelationshipbetweenblogreader supportandloneliness.526S.A.Rains&D.M.Keating
controlvariableswereenteredinthefirstblockofthemodel,andperceivedsupport fromfamilyandfriendswasenteredinthesecondblock.Therelationshipbetween blogreadersupportandfamilyandfriendsupportwasnotsignificant, .02, t .22, p .83. Discussion Thisprojectinvestigatedthesocialdimensionofbloggingaboutone Â’ sexperience withahealthcondition.Theresultsprovideevidencethathealthbloggingisrelated toperceivedsocialsupportfromblogreadersandthatblogreadersupportis associatedwithmeasuresofbloggers Â’ well-being.Further,theavailabilityofsupport inbloggers Â’ strong-tierelationshipswithfamilyandfriendsmoderatedtherelationshipbetweenblogreadersupportandtwomeasuresofbloggers Â’ well-being.Inthe followingparagraphs,thesefindingswillbediscussedandtheirimplicationsfor researchandtheorizingaboutnewcommunicationtechnologies,socialsupport,and healthcommunicationwillbeconsidered. Blogging,SocialSupport,andWell-being Thereissomeevidencetosuggestthatbloggingaboutahealthconditionmaybea meansofmarshallingsocialsupportfromblogreaders.Bloggingfrequency,which involvesthetotalnumberofpostsmadebyrespondentsinthe42dayspriorto completingthequestionnaire,waspositivelyassociatedwithperceivedblogreader support.Respondentswhobloggedmorefrequentlyreportedgreaterlevelsofsupport availablefromblogreaders.Theresultsalsounderscorethesocialnatureofblogging demonstratedinpriorresearch(Stefanone&Jang,2008)andshowthatreader feedbackisanimportantcomponentofhealthblogging.Theproportionofposts withatleastonereadercommentwaspositivelyassociatedwithperceivedblogreader support. Inadditiontodemonstratingthathealthbloggingisameansofacquiringsocial support,theresultsoffersomeevidencethatblogreadersupportisconsequentialfor bloggers Â’ well-being.Blogreadersupportwaspositivelyassociatedwithbloggers Â’ perceptionsofhealthself-efficacy.Theinformationandempathybloggersreceived fromreadersmayhaveencouragedthemtofeelmoreconfidentintheirabilityto managetheirhealthcondition.Blogreadersupportwasalsoassociatedwithbloggers Â’ perceptionsofsocialfunctioning,butthisrelationshipwasqualifiedbyasignificant two-wayinteractioninvolvingfamilyandfriendsupport. Atabroaderlevel,theresultsofthisstudyofferinsightsabouttheimplicationsof communicationtechnologiesforsupportivecommunication.Blogsrepresentanovel resourceforacquiringsocialsupport.Blogginginvolvesbroadcastingone Â’ sconcerns inaformatthatispublicandmediated.Thedatafromthisstudysuggestthat bloggingmakesitpossibletoreinforceconnectionswithstrongties.Indeed,for someindividuals,akeybenefitofbloggingmaybereinforcingexistingstrong-tie relationships.One-thirdofbloggersestimatedthat25%ormoreoftheirreaderswereSocialDimensionofHealthBlogging527
familyorfriends.Grantedthatfamilyandfriendsupportwasassociatedwithallfive ofthehealthoutcomesrelatedtowell-being,maintainingorreinforcingstrong-tie connectionsmayhaveimportantconsequencesforsomehealthbloggers.Fora majorityofbloggersinthesample,however,blogreadersareasupportresourcethat isdistinctfrombloggers Â’ familyandfriends.Similartocomputer-mediatedsupport groups(Tanis,2008;Wright&Bell,2003;Wrightetal.,2010),thepublic natureofbloggingmakesitpossibleforbloggerstogainaccesstoweakties.Twothirdsofbloggersinthesampleestimatedthatlessthan25%oftheirreaders consistedoffamilyorfriends.Moreover,therelationshipbetweenblogreader supportandfamilyandfriendsupportwasnotstatisticallysignificant.Although bloggingmightmakeitpossibleforarelativelysmallportionofhealthbloggersto reinforceconnectionswithfamilyandfriends,amoregeneraloutcomeofbloggingis increasingbloggers Â’ accesstouniquesupportresourcesandextendingtheirsupport network. Bloggingisalsoanovelresourceforsupportbecauseitiscomputermediated. Technicalandnormativedimensionsofblogsmayhelpbloggersandreadersmanage someofthefaceworkdilemmasinherentinacquiringandprovidingsupport thathavebeenidentifiedinpriorresearch(Goldsmith,1992,1994).Blogsallow asynchronouscommunicationandfiltermanyofthesocialcuesthatarepresentin face-to-faceinteraction.Thegenreofbloggingalsomakesappropriateandinvites extendedselfdisclosurefromasinglepersonovertime(Herringetal.,2004;Qian& Scott,2007;Sundaretal.,2007).Theresultsofthisstudyprovideevidenceconsistent withtheideathatbloggingmayservetofacilitatesupportivecommunication. Bloggersinthesamplewerefairlyactiveduringthe42dayperiod,writing approximately17totalpostswithameanofapproximately475wordsperpost. Thenumberofpostsmadebybloggerswaspositivelyassociatedwithperceivedblog readersupport.Theseresultssuggestthatbloggersfeltrelativelycomfortablesharing theirhealthexperiencesintheirblogandwereabletoconstructmessagesthat promptedsupportfromblogreaders.Further,theproportionofblogpostswithat leastonereaderresponsewaspositivelyassociatedwithperceivedsupportfromblog readers.Itappearsthatreaderswereabletoconstructsupportivemessagesinthe formofcommentspostedtoblogsthatencouragedbloggerstofeelagreatersenseof informationandemotionalsupport. SupportfromFamilyandFriendsModeratestheRelationshipbetweenBlogReader SupportandOutcomesRelatedtoWell-being Thefindingsfromthisstudyalsodemonstratethattheavailabilityofsupport fromstrongtieshasimplicationsforoutcomesrelatedtobloggers Â’ well-being. Familyandfriendsupportmoderatedtherelationshipsbetweenblogreadersupport andbothlonelinessandpersonalgrowth.Bothinteractionswereconsistentwith thesocialcompensationperspective(Krautetal.,2002).Whenfamilyandfriend supportwasrelativelylacking,blogreadersupportwasnegativelyassociatedwith lonelinessandpositivelyassociatedwithpersonalgrowth.Whenfamilyandfriend528S.A.Rains&D.M.Keating
supportwasavailable,therelationshipsbetweenblogreadersupportandthesetwo outcomeswerenotsignificant.Healthbloggingappearstopresentanopportunity forindividualslackingsupportfromtheirstrongtiestoaccesssupportresourcesand bolstertheirwell-being.Giventhebodyofresearchlinkingsocialsupportwith positivehealthoutcomesrelatedtophysiologicalfunctioning(Uchino,2004)and psychosocialwell-being(Smithetal.,1994),thepotentialforhealthbloggingto helpindividualsovercomedeficitsinsupportfromtheirfamilyandfriendsis noteworthy.Healthbloggingstandstobenefitthoseindividualsmostinneedof support. Thefindingsconsistentwiththesocialcompensationperspectivehaveseveral implications.Theseresultsofferinsightintotheinterrelationshipbetweenstrongand weaktiesinthecontextofsocialsupport.WrightandMiller(2010)contendthat,in someinstances,strongtiesmaybeunableorunwillingtoprovideeffectivesupport. Weaktiesarecastasanalternativetostrongties.Beyondbeinganalternative,the resultsofthisstudysuggestthatweaktiesmaybemostimportantwhensupportfrom strongtiesisunavailable.Althoughblogreadersmaybecomprisedofstrongand weakties,bloggersinthesampleestimatedthatamajorityoftheirreaderscouldbe consideredweakties.Forscholarsandpractitionersdevelopinghealthinterventions aimedatfacilitatingsocialsupport,theresultsconsistentwiththesocialcompensationperspectivesuggestsomesituationsinwhichhealthbloggingmightbeavaluable tool.Ininstanceswherestrong-tiesupportnetworksaresystematicallyunavailable, communicationtechnologiessuchasbloggingmightbeparticularlyuseful.For example,individualswithstigmatizedhealthconditionssuchasHIVorAIDSmay facedifficultiesacquiringsupportfromtheirfamilymembers(Peterson,2010). Communicationtechnologiessuchasbloggingmightmakeitpossibletoincreasethe accessibilityofweaktiesandprovideopportunitiesforacquiringsocialsupportand thecommensuratebenefitsofsupportivecommunication.Finally,theresultsaddto thebroaderbodyofresearchexaminingthesocialenhancementandsocial compensationperspectives.Althoughrelativelyfewstudieshavefocusedspecifically onoutcomesrelatedtowell-beingandhealth(e.g.,Bessiereetal.,2008;Krautetal., 2002),priorresearchhasreportedfindingsconsistentwiththesocialcompensation perspective.Bessiereetal.(2008)foundthat,ofthosewhousedtheInternettomeet newpeople,individualswithsmallersocialnetworksandlessperceivedsupportdid notreportasmuchofanincreaseindepressionacrosstwomeasurementpointsas didindividualswhohadlargersocialnetworksandgreaterlevelsofperceived support.Thepresentstudyextendsresearchonsocialcompensationtotherealmof bloggingandhealth-relatedInternetuseandprovidesevidencethat,throughusing Internet-basedcommunicationtechnologies,thosepoorinsupportresourcesmay improvetheirwell-being. Noneofthetestsexaminingsupportfromfamilyandfriendsasamoderatorofthe relationshipsbetweenhealthbloggingandperceivedsupportfromblogreaderswere significant.AlthoughpreviousresearchinvestigatingInternetusetoimprovesocial connectionshasreportedevidenceconsistentwiththesocialenhancementperspective(Krautetal.,2002;Lee,2009),thosestudiesexaminedcommunication-relatedSocialDimensionofHealthBlogging529
Internetusebroadly.Thefindingsfromthisstudysuggestthatsupportfromblog readersacquiredfromhealthbloggingisnotdependentuponexistingstrong-tie relationships.Itmaybethat,inthecontextofhealthblogging,thosewhohaveand lackfamilyandfriendsupportequallybenefitintermsofacquiringblogreader support. Limitations Inevaluatingtheresults,threelimitationsofthisprojectwarrantconsideration.First, thesampleusedinthisstudywaslargelycomprisedofdedicatedbloggerswriting publicblogs.Theblogsexaminedinthisprojecthadbeeninexistenceforameanof almosttwoyearsandrespondentsmadeablogpostapproximatelyonceevery twodaysduringthesixweekspriortocompletingthestudyquestionnaire.Further, alloftheblogsinthesamplewerepublicinthattheywerenotpasswordprotected. Itisunclearwhethertheoutcomesfromthisstudywouldgeneralizetonovice bloggersorpeoplewhowriteaprivateblog.Second,thesampleincludedindividuals copingwitharangeofserioushealthconditions.Althoughincludingadiverse sampleincreasesthegeneralizabilityofthefindings,italsoseemspossiblethatthere maybedifferencesinrespondents Â’ supportneedsbasedonthenatureoftheir illnessthatcouldinfluencethesupport-relatedoutcomesofblogging.Third,as previouslynoted,thevariablesassessingblogreadersupportandsupportfromfamily andfriendsarenotindependent.Ratingsofblogreadersupportcouldpresumably includethesupportperceivedfromfamilymembersandfriendswhoreadtheblog.2Toaccountforthispossibility,theproportionofblogreaderswhowerefamilyand friendswasincludedasacontrolvariableinallanalyses. DirectionsforFutureResearch Theresultsofthisprojectsuggestseveralpossibledirectionsforfuturescholarship. First,itwouldbeworthwhiletofurtherexplorethesocialdimensionofblogging byconsideringtheimplicationsofreadercomments.Ameanofapproximatelytwo commentsfromuniquereaderswereincludedperblogpostexaminedinthisstudy. Futureresearchmightconsidertheroleofsuchcommentsinbloggers Â’ experiencesof theirillness.Readercommentsmaybeparticularlyinstrumentalinsubsequent blogpostsandthenarrativebloggersareconstructingabouttheirhealthandhealth conditions.Second,itisimportanttoconsiderthejournalingcomponentof blogging.Researchexaminingthetherapeuticbenefitsofwritingaboutimportant lifeeventsunderscoresthevalueofexpressingone Â’ sexperiencesinwriting (forareview,seePennebaker&Chung,2007).Althoughtherearekeydifferences betweentheexpressivewritingparadigmandblogging,itseemspossiblethatsomeof thehealthbenefitsofexpressivewritingmightextendtoblogging.Futureresearch mightalsoexploretheuseofandoutcomesassociatedwithparticularformsof expressionsuchasinsightfulselfdisclosure(Shaw,Hawkins,McTavish,Pingree,& Gustafson,2006).530S.A.Rains&D.M.Keating
Conclusion Thisprojectextendsthetraditionofresearchexaminingtheuseofcommunication technologiesforacquiringsocialsupporttothedomainofhealthblogging. Theresultsunderscorethesocialsignificanceofbloggingaboutone Â’ sexperiences withahealthcondition.Healthbloggingwasrelatedtoperceivedsocialsupport fromblogreaders.Moreover,blogreadersupportwasparticularlycriticaltothewellbeingofindividualslackingsupportfromtheirstrong-tierelationships.Althoughthe findingssuggestthathealthbloggingmayhavepromiseasameansforacquiring socialsupportandtheattendanthealthbenefitsofsupportivecommunication,future researchisnecessarytomorefullyunderstandthesocialdimensionofhealth bloggingrelatedtosocialsupportand,moregenerally,theimplicationsofnew communicationtechnologiesforhealthcommunication. NotesTwooftherespondentsmetthecriteriaforinclusionintheprojectatthetimetheblog searchwasconductedtoidentifythesample.However,theydidnotmakeablogpostduring the42dayspriortocompletingthequestionnaire.Thesetwoparticipantswereretainedin thesamplebecausetheyhaveahistoryofactivehealthbloggingthatisgenerallyconsistent withremainingbloggersinthesample. Althoughitwouldhavebeenpossibletoseparatecompletelythesetwosources,webelieve thatthelimitationsofdoingsooutweighthebeneÃžts.Inpractice,blogreadersareaunique supportresourcebecausetheymaybecomprisedofbothstrongandweaktiesthatintersect bloggers'ofÃŸineandonlinesocialnetworks.Askingbloggerstodistinguishandevaluatethe supporttheyreceivefromblogreaderswhoareandarenotfamilyandfriendscreatesan artiÃžcialdistinctionthatwouldundermineanyglobalevaluationofblogreadersasasupport resource.Moreover,askingrespondentstoratesupportavailablefromthesetwotypesof blogreaderswouldhaverequiredincreasingthelengthandapparentredundancyofthe questionnaireand,ultimately,creatingadditionalbarrierstoparticipationamonga reasonablydifÃžcultpopulationtosample.ReferencesAalto,A.M.,Uutela,A.,&Aro,A.R.(1997).Healthrelatedqualityoflifeamonginsulin-dependent diabetics:Diseaserelatedandpsychosocialcorrelates. PatientEducationandCounseling , 30 , 215 225. Adelman,M.B.,Parks,M.R.,&Albrecht,T.L.(1987).Beyondcloserelationships:Supportinweak ties.InT.L.Albrecht&M.B.Adelman(Eds.), Communicatingsocialsupport (pp.126 147). NewburyPark,CA:Sage. Albrecht,T.L.,&Adelman,M.B.(1987a).Communicatingsocialsupport:Atheoretical perspective.InT.L.Albrecht&M.B.Adelman(Eds.), Communicatingsocialsupport (pp.18 39).NewburyPark,CA:Sage. Albrecht,T.L.,&Adelman,M.B.(1987b).Communicationnetworksasstructuresof socialsupport.InT.L.Albrecht&M.B.Adelman(Eds.), Communicatingsocialsupport (pp.40 63).NewburyPark,CA:Sage.SocialDimensionofHealthBlogging531
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