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1 IS DISEASE REAL? FEMALE FIBROMYALGIA PATIENTS RESPOND TO THE MEDIATED QUESTION AND THE MEANING OF DIAGNOSIS TO THEIR LIVES By JOY LYNN RODGERS A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVER SITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2013
2 201 3 Joy Lynn Rodgers
3 To all the people who live with the pain of fibromyalgia and especially the women who suppor ted me on this journey by agreeing to take part in interviews and willingly sharing their experiences
4 ACKNOWLEDGMENTS Many people whose guidance, support, and love have helped me re ach this end deserve acknowledg ment here. I want to thank my advisor a nd committee chair Dr. Debbie Treise for her caring and thoughtful counsel throughout this challenging endeavor. She has been a big part of why my time at the University of Florida has been so rewarding. I am fortunate to have had this opportunity to wor k with her. Together with Dr. Treise, my committee has been instrumental in helping me advance my dissertation. I want to thank Dr. Lind a Hon, Dr. Johanna Cleary, and Dr. Virginia Dodd not only for their insightful contributions to this dissertation effort but also for all they have taught me about being a researcher and a teacher Beyond the individuals on my dissertation committee are several other people who deserve recognition. I would like to express my gratitude to the 13 women who took part in this s tudy. In sharing their personal experiences, they serve as inspiration to others with fibromyalgia and help improve public understanding of the challenges of dealing with a contentious medical diagnosis. I would like to give special thanks to Nichola Moret ti, who not only provided inspiration for this study but also has been one of my biggest cheerleaders. Thanks also are in order to Maria De Moya and Rajul Jain who afforded a necessary zany outlet to escape the madness of doctoral studies. I am especially indebted to both for their friendship and ongoing support as I completed the final stages of this dissertation. Additionally, I want to recognize my early co researcher Mari Luz Zapata Ramos, who took the initial steps with me on this dissertation journey. I would be remiss if I neglected to thank my dissertation support network that included Dr. Norm Lewis and Dr. Beth Chaney. I am fortunate to have such wonderful
5 friends and colleagues who offered their continual professional and emotional support as I co mpleted various stages of this dissertation. Furthermore, I would like to thank Jody Hedge, Kimberly Holloway, and Sarah Lee for their administrative support in navigating the doctoral program. I deeply appreciate their kind guidance and quick answers to t he countless questions I threw at them along the way. I am thankful to my family, some of who m may never have truly understood what all this dissertation stuff was about but loved and supported me anyway. I want to specifically recognize my sister in law, Cheryl Rodgers, for her occasional motivational pushes to get to work and her never ending confidence that I really would get it done. Completing this dissertation required a tremendous amount of commitment, and I faced several obstacles along the way. Th roughout the journey, my husband, Ron Rodgers, served as a much needed calming presence. No words can express how much I love and appreciate him. While I value the wisdom, encouragement, and writing lessons he has given me throughout our years together, I am especially grateful for his ability to make me laugh when things get stressful. He is the most wonderful husband and best friend that anyone could ask for. I will always love him.
6 TABLE OF CONTENTS Page ACKNOWLEDGMENT S ................................ ................................ ................................ .. 4 LIST OF TABLES ................................ ................................ ................................ ............ 9 LIST OF FIGURES ................................ ................................ ................................ ........ 10 ABSTRACT ................................ ................................ ................................ ................... 11 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ .... 13 Purpose and Significance of the Study ................................ ................................ ... 13 Setting the Sta ge ................................ ................................ ................................ .... 16 Statement of the Problem ................................ ................................ ....................... 17 Methods Employed ................................ ................................ ................................ 19 2 LITERATURE REVIEW ................................ ................................ .......................... 22 The Fibromyalgia Question ................................ ................................ ..................... 22 Evolution of Fibromyalgia ................................ ................................ ................. 23 What Is Fibromyalgia? ................................ ................................ ...................... 25 The Diagnostic Dilemma ................................ ................................ .................. 28 The Question of Health, Illness, and Disease ................................ ......................... 30 ................................ ............................ 31 Cultural Experiences of Illness ................................ ................ 34 Philoso phical and Theoretical Frameworks ................................ ............................ 37 Phenomenology ................................ ................................ ............................... 38 Grounded Theory and Symbolic Interactionism ................................ ................ 42 Framing Theory ................................ ................................ ................................ 44 3 METHODOLOGY ................................ ................................ ................................ ... 49 Justification for Qualitative Inquiry ................................ ................................ .......... 49 Justification for Grounded Theory ................................ ................................ ........... 51 Methods ................................ ................................ ................................ .................. 54 Qualitative Content (Framing) Analysis ................................ ............................ 55 In Depth Interviews ................................ ................................ .......................... 58 IRB approval ................................ ................................ .............................. 59 Pilot interview ................................ ................................ ............................. 60 Theoretical sampling ................................ ................................ .................. 61 Recruitment and interview process ................................ ............................ 62 Coding, cate gorizing, and memoing ................................ ........................... 64 Literature review and theoretical sensitivity ................................ ................ 65
7 Trustworthiness of the findings ................................ ................................ .. 67 Subjectivity of research and statement of subjectivity ................................ 67 4 FINDINGS ................................ ................................ ................................ ............... 70 Qualitative Fram ing Analysis ................................ ................................ .................. 71 Lifestyle Frame ................................ ................................ ................................ 73 Legitimation Frame ................................ ................................ ........................... 75 Mystery Fr ame ................................ ................................ ................................ 77 Industry Frame ................................ ................................ ................................ 78 Stigma Frame ................................ ................................ ................................ ... 80 In Depth Interviews ................................ ................................ ................................ 81 Pilot Interview ................................ ................................ ................................ ... 82 Interview guide and protocol ................................ ................................ ...... 82 Pilot interview fin dings ................................ ................................ ............... 83 In Depth Interviews ................................ ................................ .......................... 88 Study participants ................................ ................................ ...................... 89 Main intervie w findings ................................ ................................ ............. 101 Theoretical Integration of Meanings ................................ ................................ ...... 127 5 DISCUSSION ................................ ................................ ................................ ....... 137 A Model of Mediated Pathways to Meanings of Fibromyalgia ............................... 137 A Grounded Theory of Meanings of Fibromyalgia ................................ ................ 142 Links to Curre nt Literature ................................ ................................ .................... 148 Social Construction of Reality ................................ ................................ ......... 148 Framing Theory ................................ ................................ .............................. 152 Social Cognitive Theory ................................ ................................ .................. 154 Transtheoretical Model and Stages of Change ................................ .............. 157 Social Networks and Social Support ................................ .............................. 159 Implications for Research and Practice ................................ ................................ 163 Limitations of the Study ................................ ................................ ......................... 165 Recom mendations for Further Research ................................ .............................. 166 APPENDIX A MAGAZINE FRAMING ANALYSIS OF FIBROMYALGIA CODEBOOK ................ 172 B MAGAZINE FRAMING ANALYSIS OF FIBROMYALGIA CODING WORKSHEET ................................ ................................ ................................ ....... 176 C INTERVIEW GUIDE ................................ ................................ .............................. 178 D INFORMED CONSENT ................................ ................................ ........................ 180 E EMAIL TO FIBROMYALGIA SUPPORT GROUP LEADERS ............................... 182 F STUDY PARTICIPANT RECRUITMENT FLIER ................................ ................... 183
8 G SAMPLE INTERVIEW TRA NSCRIPT ................................ ................................ ... 184 LIST OF REFERENCES ................................ ................................ ............................. 206 BIOGRAPHICAL SKETCH ................................ ................................ .......................... 221
9 LIST OF TABLES Table page 4 1 List of periodicals and number of articles on fibromyalgia dating from 1980 to 2011. ................................ ................................ ................................ ................ 135 4 2 List of number of articles on fi bromyalgia found in periodicals between 1980 and 2011. ................................ ................................ ................................ ......... 135 4 3 List of characteristics found in fibromyalgia coverage in periodicals. ................ 136 4 4 List of dominant frames found in headlines and body texts of fibromyalgia coverage in periodicals. ................................ ................................ .................... 136 4 5 Relationships between theoretical categories found in media texts and inte rview transcripts. ................................ ................................ ......................... 136
10 LIST OF FIGURES Figure page 5 1 Examples of potential mediators of communication ................................ .......... 170 5 2 Proposed Model of Mediated Pathways to Meanings of Fibromyalgia ............. 171
11 Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment o f the Requirements for the Degree of Doctor of Philosophy RESPOND TO THE MEDIATED QUESTION AND THE MEANING OF DIAGNOSIS TO THEIR LIVES By Joy Lynn Rodgers May 2013 Chair: Debbie Treise Major : Mass Communication This dissertation contributes to the body of literature on the experiences of fibromyalgia sufferers and their relationships with family, friends, and physicians amid media coverage of a contested illness. While l iterature in sociolog ical and health journals has provided a growing body of knowledge on coping with ill defined chronic illness es this is the first study to explore how women with fibromyalgia navigate a media landscape saturated with prevailing stereotypes that define U.S. cultural ideas of health. The media collectively serve as a dominant institution, which portrays and perpetuates powerful socio cultural messages about health and women. Given the focus of the media and the dispute in the medical community over the existe nce of fibromyalgia as a physical or mental condition, how do women with fibromyalgia conceptualize their illness? This qualitative dissertation explored the challenges faced by women fibromyalgia patients, with a specific focus on media influence over tim e A qualitative framing analysis of magazine articles and in depth interviews provided rich insight into the lives of 13 women who have experienced the effects of the publicly
12 misunderstood, medically perplexing, and often debated diagnosis known as fibro myalgia. Findings from this grounded theory study suggest a model of mediated pathways to meanings of fibromyalgia diagnosis that incorporates intrinsic and extrinsic mediators of communication. The mediator s are aligned along two continua: one related to the degree to which the factor directly or indirectly taps into affective and cognitive processes and social, cultural, and environmental attributes of fibromyalgia patients and their meaning making relationships and the other to the degree to which the me diator is variable. The proposed Model of Mediated Pathways to Meanings of Fibromyalgia making through a direct pathway with no mediators between or indirect pathway comprised of intrinsic and extrinsic mediators. The insight gained from historical analysis of media texts and interviews afforded greater awareness of how media are implicated in promulgating fibromyalgia stereotypes and how women find meaning in their diagnosis. This information could increase sensitivity among the public and health professionals of what a diagnosis of fibromyalgia actually means to patients.
13 CHAPTER 1 INTRODUCTION Your shoulders hurt, and come to think of it, so do your knees and hips. Your sleep refreshed. You may have headaches and stomach pain, and just walking to the mailbox feels like more exercise than you can or want to manage. In many places on your body, even a little pressure feel s painful. You take aspirin and you rest, but nothing seems to help much. Mostly, you feel miserable and bewildered. (Arthritis Foundation, 2002, p. 1) These are the typical first hints of the mysterious condition fibromy algia that lead The problem is even more confounding to doctors inasmuch as researchers have yet to find a physiological origin for the ailment (Arthritis Foundation, 2002, p. 1) Without scientific proof of over whether the illness classifies as a physical disease or a mental condition (Goldenberg, 2008) Addi tionally, the debate is revisited in the media with each new release on research findings or new treatments. In the middle of the controversy is the patient, still wondering, Purpose and Significance of the Study The meaning of health, disease, and illness is not obvious because of the key role value judgments play in their definitions. Boyd (2000) suggests a common core of ideas same or similar value judgm judgments on whether a condition is a disease, or on what or who is (Boyd, 2000, p. 12) Physician patient communication is a relatively new area of study, with much of the research being done by scholars outside the field of communication
14 (Cegala & Street Jr., 2010) Moreover, most re searchers in physician patient communication have approached the topic pragmatically to improve communication, the very essence of communication (e.g., as a process of mutual influence, affective cognitive factors affecting communicative performance and perceptions) are often (Cegala & Street Jr., 2010, p. 403) One tenet of media coverage of any issue is the presentation of information in a tension between the social impact versus the economic health and well being of ut also how they are presented (Andsager & Powers, 2001, p. 163) This selection and emphasis of certain aspects of issues is referred to as news framing. Magazine coverage of issues is seen as especially focused on the elements of drama (impact) and timeliness, with a particular focus on the latest breakthroughs in medicine. Such coverage generally contributes more to profits, or the bottom line, than questions of researchers and their (Schwitzer, et al., 2005) ing (Andsager & Powers, 2001, p. 164) Furthermore, media coverage of particularly in the areas of cancer and sexual hea lth For example, media coverage of coverage bill allowing biannual mammograms for women over the age of 65, as well as
15 screenings for poor women in some states (Andsager & Powers, 2001) And partly in response to a grass roots campaign by the National Breast Cancer Coalition, the National Cancer Institute in 1994 increased its funding for breast cancer research 34% from 1993 (Andsager & Powers, 2001) Given the focus of the media and the dispute in the medical community over Where is the patient in this debate? Such a qualitative quest ion necessitates research (Holloway & Wheeler, Nature of qualitative res earch, 2002, p. 3) Few research studies have been done t o date on what a diagnosis means to fibromyalgia sufferers and no studies have addressed specifically the question with women who have the condition. Furthermore, no studies have examined the media making processes over the course of time. In an effort to fill these gap s t his dissertation took the initiative in understanding meaning making and how women conceptualize messages about their experiences and primary heal th concerns not only by the media but also by their physicians and interpersonal relationships. Specifically, this study examined the experiences of fibromyalgia patients in the United States in an effort to build theoretical knowledge that would contribut e to a better appreciation of the way things appear to women with the condition. Information obtained in this exploratory health communications study may help to raise awareness of the experiences of women with fibromyalgia among the people involved in the conversations, specifically the media and medical practitioners. Insights gained from this study also may help establish a new
16 line of thinking that could lead to improvements in practice and increase sensitivity toward those with fibromyalgia. Additional ly, the study may help to fill a void in existing literature by assessing an issue with an understudied group. Setting the Stage Fibromyalgia is an ambiguous condition distinguished in part by chronic, widespread pain and pain sensitivity that poses a num ber of challenges for physicians and patients alike. The main issue behind fibromyalgia is that it seemingly defies medical understanding, in part because no definitive diagnostic test exists (Cranford & King, 2011; Fitz charles, 1999) T he condition also often is associated with other chronic illnesses including chronic fatigue syndrome, irritable bowel syndrome, rheumatoid arthritis, depression, and anxiety (Mease, 2009) Consequently, suff erers can go years and consult multiple physicians before receiving a diagnosis of fibromyalgia. The costs associated both with initial diagnosis and subsequent treatment can be high in terms of excess doctor visits, tests conducted, and prescriptions give n (National Fibromyalgia Association, 2009) In fact, the amount of pain a patient has is directly correlated to the costs associated with the disorder. Sanchez, et al. (2011) found that t he annual average direct costs for fibromyalgia patients ranged from $3,400 to $3,600, with office and emergency room visits, procedures and tests, and hospitalizations among the largest components of direct costs. Indirect costs such as lost wages from ti me off work, unemployment, disability, and non paid medical expenses serve to further push up the costs of fibromyalgia. Indeed, Wassem and Hendrix (2003) found the combined direct and indirect costs for fibromyalgia patients to be as high as $68,381. Anot her study comparing annual health care costs by stage of diagnosis found significantly higher
17 medical costs from pre diagnosis to newly diagnosed, with slightly lower average medical costs among established patients (White, et al ., 2009) However, the White, et al. (2009) study also showed increased prescription drug costs at every stage, which contributes to higher overall health care costs. The World Health Organization in 1992 declared fibromyalgia a significant medical prob lem and included the condition in its 10 th International Classification of Diseases (ICD 10). In the developed world, fibromyalgia may be one of the more common diagnoses given to patients complaining of musculoskeletal pain (Fit zcharles, 1999) with diagnoses of fibromyalgia on the rise in several countries. For example, the number of fibromyalgia diagnoses in Spain grew from 2.4% in 2000 to nearly 13% in 2005 (Garcia Fructuoso, 2007) In the Unit ed States, an estimated 10 million adults are affected by fibromyalgia (Zanni, 2009) with women in the middle years of life comprising between 75% and 90% of fibromyalgia cases (About fibromyalgia: Pr evalence, 2009) In this light reason might dictate that fibromyalgia is gaining recognition in both t he medical and lay communities. However, some medical professionals question whether fibromyalgia with its vague and broad combination of symptoms can be classified as a disease. Statement of the Problem The main dispute over physiological origin, leading some medical practitioners to question whether pain associated with fibromyalgia is more min d or body (Goldenberg, 2008) While the debate over the existence of fibromyalgia has been long standing taking place since the term fibromyalgia was coined in 1981 (Wallace, 1997) the question seems to gain renewed interest in the medical and lay communities upon media reports related to
18 research findings or new treatments More recently, FDA approval of two drugs for the treatment of fibromyalgia Lyrica in 2007 and Cymbalta in 2008 and the subsequent marketing of these drugs ha ve fueled the debate. Indeed, the headline on a January 14, 2008, New York Times story by Alex Berensen ABC News article by Radha Chitale Seemingly in response to such media coverage, m edical practitioners on both sides have weigh ed in o n the issue through health forums and conferences For example, t he February 13, 2008, W ebcast Health Now specifically referenced the New York Times story (Berensen, 2008) in the introduction to an interview with fibromyalgia proponent Dr. Don Goldenberg, who spoke about how uncomfortable some doctors are wit (Goldenberg, 2008) Additionally, in October 2009, the Association of Rheumatology He alth Professionals held a debate in which medical practitioners spoke for and against fibromyalgia as a true disease and discussed the best approaches to caring for patients who exhibit symptoms characteristic of the condition (Butterfield, 2009; Rheumatologists debate, 2009) The primary argument against fibromyalgia as a clinical disease stems from its vague and varied symptoms, which are common to a number of other fibromyalgia like illnesses. According to Dr. Antho ny Russell, labeling an illness a physicians should avoid supporting such views (Butterfield, 2009) Dr. Leslie Crofford disagrees that providing patients a name for a problem is a bad thing. She suggests that
19 patients benefit from having their illness labeled as fibromyalgia because they are less likely to spend additional time and resources looking for an explanation and can move on to devote more energy to managing their condition. how the ailment should be treated as a medical or mental condition or whether fibromyalgia ill defined musculoskeletal pain, non specific symp toms, and psychological distress might be early signs of some other condition. Fibromyalgia is considered a permanent condition. However, remissions can occur. Consequently, fibromyalgia persists in puzzling medical practitioners. W hile research has contin ually built on treatment and diagnostic possibilities, most studies have been approached from a clinical standpoint to increase practitioner awareness and understanding of fibromyalgia Little research has fibromyalgia means to them. Method s Employed phenomenological approach to understanding the meanings of experiences is a movement toward bridging the current gap between theory and practice. Rather than starting with theory and hypothesis testing, the phenomenological researcher begins with experience to describe its meaning then enters into dialogue with existing theory. Phenomenological research methods were used in this study to learn about the actual lived experience of women with fibromyalgia in the United States. The goal of phenomenological research is to subjective world (Schwandt, 2000) perspective. In other words, the view of the participant, in the most direct way possible. Phenomenological researchers
20 enter the life world of participants by leaving behind their preconceived ideas of how things should be (Wertz, 2005) The researchers then gather data usually through interviews or archival means and reflect on the subjective realities of the phe nomenon under consideration (Wertz, 2005) totality in a fresh and open way (Moustakas, 1994, p. 34) Through a series of reflections on the meanings within the data, researchers construct a portrait of the experience of the participants. This study in part employed a qualitative framing analysis to examine how fibromyalgia is depicted in news and feature articles published in periodicals betw een January 1, 1980 and December 31, 2011 the date of data collection This period not only reflects a growing recognition by doctors and researchers of fibromyalgia and the establishment of defining criteria for diagnosis but also provides some historic al context for the question of fibromyalgia and its disease status. The choice to examine periodicals was based primarily on the combination of news and entertainment elements that health and health risks (Andsager & Powers, 2001) To further enhance understanding of the complex question of fibromyalgia in depth interviews with female fibromyalgia patients in the United States also were conducted. Fibromyalgia primarily af fects women Thus in depth interviews were deemed best to illuminate the fibromyalgia experience as narrated by those most directly affected by the condition The data analysis used a constant comparison method to identify the manner in which themes represented in the interview transcripts and frames identified in the magazine articles were either similar or different. Constant comparison involves making
21 associations among the data as soon as the first data are collected and at each stage of th e analysis (Glaser & Strauss, 1967) The idea behind the compare and contrast method is that themes represent the ways in which texts are either similar or different. In other words, instead of focusing on a pre determined numb er of interviewees or documents to review, the research is guided by the analysis in identifying what data are needed next and where to find the data (Goulding, 1998) Grounded theory methodology was chosen for this study based on the research question and the applicability and feasibility of the method in the context of the phenomena of interest. Relatively few studies have explored the question of fibromyalgia from the perspective of the patient. The central research question of the current study falls outside the quantitative paradigm of testing existing theories Rather, t he goal of the study was to develop substantive theory, which can help people better understand and interpret what living with a fibromyalgia diagnosis mean s to women with the condition. Grounded theory research aims to develop substantive or formal theory as a means to explain social processes. Thus, phenomenology and grounded theory are both central to this dissertation. These and other methodological stage s of the study are further detailed in the method ology, Chapter 3.
22 CHAPTER 2 LITERATURE REVIEW The long in part between definitional differences of disease an d perceptions of and socio cultural experiences with illness. This chapter begins with a review of the fibromyalgia question, outlining the evolution of fibromyalgia and its diagnostic challenges. The question of health, disease, and illness is n ext explored from the perspect ive of physicians and patients. This dissertation is qualitative in nature, focusing in large measure on the social construction of the meaning a diagnosis of fibromyalgia holds for patients. While qualitative forms of inquiry are many and broad, this study is approached primarily from a phenomenological philosophy and founded in framing and grounded theory. Th is chapter concludes with a discussion of the se underlying philosophical and theoretical frameworks and the specific re search questions to be addressed in this study. The Fibromyalgia Question (Wallace, 1997, p. 17) meaning patients generally undergo initial laboratory and imaging tests to rule out illnesses with similar symptoms. People with fibromyalgia typically appear healthy and exhibit no outward signs of pain or fatigue (Arthritis Foundation, 2002) The National Fibromyalgia Association estimates from 3% t o 6% of the world population is affected by the condition (About fibromyalgia: Prevalence, 2009) Despite its worldwide prevalence, fibromyalgia remains unfamiliar to or poorly understood by many people inside and outside the m edical community (Arthritis Foundation, 2002; Wallace, 1997) And although the pain of fibromyalgia is a universal experience, the approach to treatment varies greatly from
23 country to country largely driv en by w hether the medical establishment accepts or does not accept that fibromyalgia is a condition worthy of medical treatment (About fibromyalgia: Prevalence, 2009) Studies have shown that most fibromyalgia patients in the United S tates spend from five to seven years and consult an average of 3.5 doctors in their search for a diagnosis (Arthritis Foundation, 2002; Wallace, 1997) For people outside the United States, that search may be even longer. On e fibromyalgia patient in Japan spoke of having had symptoms of fibromyalgia for 37 years before receiving a diagnosis (Hashimoto, 2007) And in Denmark, the waiting list to see a specialist who may be capable of diagnosing fibromyalgia is anywhere from nine months to 18 months (Venegas, 2007) Thus, the lack of general knowledge about and objective physical evidence for fibromyalgia has led to sometimes frustrating quests for answers. The following subsections offer a review of literature pertaining to the question of fibromyalgia. Evolution of Fibromyalgia Discussion of the symptoms of fibromyalgia as the syndrome is known today began appearing in medical literature in the early 1900s (Wallace, 1997) While s everal terms such as hysterical paroxysm and muscular rheumatism (Richards, 2006) were used at the time to describe the exaggerated pain and tenderness associated w ith the condition Sir William Gowers came up with the label fibrositis in a 1904 paper detailing inflammatory changes in fibrous tissues of the muscles of the (Inanici & Yunus, 2004; Wallace, 1997) The syndrome began to attract more attention during and after World War II when b etween 50% and 70% of rheumatic patients admitted to a British Army hospital were diagnosed with fibrositis (Inanici & Yunus, 2004; Wallac e, 1997) Similar muscle pain disorders were reported in U.S. military hospitals, with one
24 report noting a prevalence of 5.8% among 450 ho spitalized patients (Inanici & Yunus, 2004) The term fibrositis appeared for the first time in a 1940 North American rheumatology textbook (Wallace, 1997) Fibrositis was a widely accepted diagnosis until the mid 1970s when studies out of the University of Toronto began linking the disorder with other sympt oms such as fatigue poor sleep stiffness, and emotional distress (Inanici & Yunus, 2004; Wallace, 1997) These studies led to a renaming of the disorder bing the condition as (Wallace, 1997, p. 9) T he studies further provided anecdotal evidence for a working set of diagnostic criteria known as tender points or areas of the body that are particularly sensitive to pressure that helped set the stage for the American College of Rheumatology diagnostic criteria used today (Inanici & Yunus, 2004) Recognition and treatment of the syndrome began to accelerate in the early 1980s when Mohammed Yunus and colleagues provided the first description of a controlled clinical study validating previous anecdotal symptoms and tender points (Inanici & Yunus, 2004) The Yunus study was the first to offer data based suggested criteria for the syndrome and also added new symptoms, including irritable bowel syndrome. Furthermore, the Yunus study gave credence to criticisms that the Latin term fibrositis, the syndrome because swelling in the joints was absent (Arthritis Foundation, 2002; Inanici & Yunus, 2004; Wallace, 1997) Yunus suggested fibromyalgia derived in part from t he Greek (muscle) ( pain ) was a more accurate description of the syndrome, which is marked by widespread muscle pain and tenderness (Arthritis Foundation, 2002;
25 Wallace, 1997) The term fibromyalgi a gained widespread usage throughout the 1980s. In 1990 Dr. Frederick Wolfe at the University of Kansas was tapped to lead the Multicenter Criteria Committee to define fibromyalgia (Wallace & Wallace, 2003) The resulting measures, which include the presence of widespread pain lasting at least three months and tenderness on 11 of 18 body tender points, were endorsed by the American College of Rheumatology and remain the standard of fibromyalgia diagnosis today (Centers for Disease Control and Prevention, 2010) What Is Fibromyalgia? (Arth ritis Foundation, 2002, p. 1) Today, f ibromyalgia generally refers to a clinical diso rder of unknown cause defined by chronic and widespread muscle pain and tenderness. However, symptoms often extend beyond defining criteria to include poor sleep, stiff ness, fatigue, anxiety, and depression (Anderson & Winkler, 2006; Dupree Jones, Adams, Winters Stone, & Burckhardt, 2006) Fibromyalgia patients often experience other pain conditions such as migraine or tension headac hes and syndromes like restless leg and irritable bowel and bladder. Physical and emotional health as well as quality of life also is often seriously impaired in fibromyalgia patients (Dupree Jones, Adams, Winters Stone, & Burckh ardt, 2006) who generally experience persistent and migratory pain that moves from head to toe (Anderson 2005) Furthermore, symptoms and associated conditions can vary in intensity and wax and wane over time (Crofford, 2010) Thus, the overlap with other illnesses coupled with the lack of definitive diagnostic tests make a clinical finding of fibromyalgia difficult and costly (Centers for Disease Control and Prevention, 2010)
26 Now classified as one of 150 conditions related to arthritis, fibromyalgia affects as many as 3.7 million Americans (Arthritis Foundation, 2002) Although fibromyalgia can be found in men and children, the condition primarily is seen in women a nd older populations (Fibromyalgia: Prevalence, 2009) A wide range of estimates exists on the number of people affected by fibromyalgia. On the higher end, the National Fibromyalgia Association reports that about 10 million pe ople in the United States and from 3% to 6% of the world population are affected by this condition (Fibromyalgia: Prevalence, 2009) However, according to the Centers for Disease Control and Prevention (2010), fibromyalgia touc hes an estimated 5 million adults in the United States, with the prevalence higher among women than men (3.4% vs. 0.5%) and rising with age. The onset of fibromyalgia generally comes in middle adulthood, between the ages of 20 and 50. The incidence rates i ncrease by the time people are 80 years old (Fibromyalgia: Prevalence, 2009) No hereditary or genetic links to fibromyalgia have been found, but the condition does sometimes occur in more than one member in a family. In additi on, people with rheumati c disea se such as osteoarthritis, lupus, or rheumatoid arthritis may be at higher risk for fibromyalgia (Crofford, 2010) Indeed, people with rheumatoid arthritis are 20% to 30% more likely to develop fi bromyalgia although the exact reason is unknown (Arthritis Foundation, 2002) A cause effect relationship between rheumatoid arthritis and fibromyalgia does not appear to exist. While rheumatoid arthritis may improve through treatment, fibromyalgia typically does not (Arthritis Foundation, 2002) Fibromyalgia is generally managed as a chronic condition with drug and non drug treatments for symptoms (Crofford, 2010) Tw o of the newer prescription drugs used to
27 treat fibromyalgia are Cymbalta, which alters brain chemicals involved in pain transmission, and Lyrica, which blocks the over activity of nerve cells involved in pain transmission (Crofford, 2010; Eli Lilly and Company, 2008; Pfizer, 2007) Older prescription drugs such as Flexeril, Prozac, Paxil, and Zoloft have been used to treat symptoms commonly associated with fibromyalgia such as muscle spasms and depression and anxiety. Over the counter medicines such as acetaminophen and non steroidal anti inflammatory drugs like ibuprofen or naproxen also have been used in the treatment of peripheral pain syndrome arthritis, for example in addition to fibromyalgia (Crofford, 2010) Non drug treatments include yoga, massage, acupuncture, and exercise, along with patient education (Centers for Disease Control and Prevention, 2010; Crofford, 2010) Researchers o ver the years have offered a number of theories that attempt to explain fibromyalgia. A few studies have shown that trauma whether physical or emotional (Buski la, Neumann, Vaisberg, Alkalay, & Wolfe, 1997; White, Carette, Harth, & Teasell, 2000) Other studies have looked at links between a lack of exercise and changes in muscle metabolism (Simms, et al., 1994) as well as associat i ons between sleep disturbances and lower production of growth hormones needed to repair muscles (Drewes, 1999) Similarities between fibromyalgia and other conditions of unknown origin chronic fatigue syndrome in particular also have been studied (Asbring & Narvanen, 2002; Fan, 2004) A link between depression and fibromyalgia has been shown to exist, but whether the relationship is caus al is a matter of debate (Arthritis Foundation, 2002) However, the fact remains that few studies have produced definitive results to the cause
28 and effects of fibromyalgia and the condition continues to confound m edical science and technology and prompt questions about its status a s a distinct clinical entity. The Diagnostic Dilemma For some physicians, a diagnosis of fibromyalgia is considered controversial and confusing. Others regard a fibromyalgia diagnosis as simple and straightforward. While both perspectives seemingly have merit, the controversy and confusion appear to center on several questions related to the origin of fibromyalgia patient labeling the subjective nature of pain and insufficient diagnostic tests (Cohen 1999; Goldenberg, 2009; Rau & Russell, 2000) These same shortcomings often exist in chronic illnesses in which diagnoses are made based on symptoms versus signs, including migraine headaches, irritable bowel syndrome, chronic fatigue syndrome and a number of other regional pain disorders (Goldenber g 2009) Like fibromyalgia, some of these chronic illnesses for example, chronic fatigue syndrome and irritable bowel syndrome also are contested by many physicians who refuse to recognize or acknowledge the conditions as distinctly medical. Such so c alled tension between lay and medical knowledge with respect to the cultural legitimation of (Conrad & Barker, 2010, p. S70) Additionally, t he lack of a clearly discernible biomedical abno rmality to explain s ufferers symptoms may lead (Conrad & Barker, 2010, p. S70) In the case o f fibromyalgia, diagnosis is further complicated not only because symptoms of the condition often overlap with those of related disorders but also because fibromyalgia frequently coexists with other so called functional illnesses that lack a structural, or organic, cause (Goldenberg 2009) A fibromyalgia label also raises
29 concerns among physicians that the diagnosis will promote among patients (Goldenberg 2009, p. S14) Skeptics of the distinctness of fibromyalgia as a clinical entity further express concerns about the subjective nature of pain and the lack of a laboratory test and a clear pathogenic mechanism by which to define the condition (Rau & Russell 2000) Nonetheless guidelines have been established to help physicians identify fibromyalgia. The most notable are the 1990 American College of Rheumatology criteria that include the symptom of widespread pain occurring on 11 of 18 tender points above and below the waist and on the right and left sides of the body (Arthritis Foundation, 2002) While these criteria have been shown to be valid and reliable (Goldenberg 2009) the tender point examination frequently has been c riticized as subjective, requiring the physician to know where and how much pressure to apply. Another criticism of the subjective nature of the tender point examination stems from a study associating tender points and psychological and general distress th at fall outside (Cohen 1999) Financial issues treatment costs, medical insurance benefits, disability support, injury compensation also have driven a lot of the fibromyalgia controversy (Rau & Russell, 2000; White, et al., 2009) fracture or sprain may be taken seriously and treated with empathy by a physician, chr onic persistent pain of any kind frequently is view ed with suspicion Rau and Russell (2000) suggest one reason for this is that few front line physicians understand the
30 physiology of the pain process (called nociception) and, as such, are more likely to c On the up side, Martinez (2004) suggest s in a letter in the Journal of Psychosomatic Research that fibromyalgia is unique to the individual and carries important psychological, familial, and social impact. Diagnosis allows for patients to start employing positive coping strategies, learned through health education resources. Anxiety stems from not knowing the cause of symptoms and thus is an aggravating factor of fibromyalgia (Martinez, 2004) More than theoretical dilemma, fibromyalgia poses challenges that have been overcome in other rheumatic diseases, namely the diagnosis, follow up, and treatment. Because fibromyalgia has no biological phenomenon for objective measurement, the solution for practitioners is to quantify symptoms for example, presence of pain in 11 of 18 tender points and the (Martinez, 2004) Rau and Russell (2000) conclude tha t while clinical results may not be unique to fibromyalgia, such findings do help distinguish fibromyalgia patients from normal people Given that fibromyalgia treatment options have had limited success, Rau and Russell (2000) further suggest that people d In other words, physicians should accept fibromyalgia patient descriptions of pain until proven otherwise and show empathy in treating these patients. The Question of Health Illness, and Disease The concepts of health, illness, and disease can be difficult to define precisely, in large part because doctors and patients often hold different views on what the words mean. Numerous researchers trying to explicate the terms gener ally have made analytical distinctions through two models: a traditional scientific view of disease
31 commonly held by physicians, and a n explanatory socio cultural perspective of illness as experienced by patients (Helman, 1981) In the m (Boyd, 2000, p. 10) Whether someone has a disease i s a matter for doctors to determine. Conversely a feeling an experience of unhealth which is entirely personal, interior to the person (Boyd, 2000, p. 10) cultural factors that in turn can aff ect not only the presentation of symptoms but also patient behaviors and relationships (Helman, 1981) Individuals ultimately decide for themselves whether they are ill or well. However, to some extent, overlap exists between t he physician and patient perspectives Eisenberg (1977) noted that s uch models are ways of constructing reality, or of imposing meaning on a chaotic world Indeed, the manner in which patients explain health, illness and disease may have little resemblanc e or relation to how a physician might view the experiences The following subsections offer an overview of the medical (biological) model and lay (socio cultural) experiences of health, illness and disease. Emphasis on Disease The World H complete physical, mental, and social well being and not merely the absence of disease absence of disease (Bury, 2005) is seemingly natural since m primary purpose is to prolong life Its secondary focus is on anything that inhibits pleasure for example, pain In this mod ern sense of (Whitsitt, 2010, p. 111) Individuals are either well or sick, with suffering lost in
32 search for a medically defin ed disease or (Helman, 1981, p. 548) Thus, diseases have universal and specific properties and identities. Their causes, symptoms, history treatment, and prognoses are considered similar across individuals or groups (Eisenberg, 1977; Helman, 1981) This comprehensive form of disease relates to definitions of health and normality inherent in the medical m odel. Normality refers to a numerical range of measurements of certain physical characteristics such as height and weight and biochemical factors including blood counts, blood pressure, heart rate, or hormone levels. Physicians view deviations outside the normal range as possible indications of disease (Helman, 1981) A biomedical phenomenon (Brown, 1995) (Boyd, 2000, p. 11) The so called medical model began to take shape in the 18 th and 19 th centuries (Bury, 2005, p. 3) Instead of an exhaustive focus on classifying symptoms physicians directed attention to underlying causes, or origin, of symptoms by linking the symptoms back to specific diseases. Thus, the medical model essentially attempt ed hological processes and their particular (Bury, 2005, p. 3) This idea of disease specific symptoms flourished in the late 19 th and early 20 th centuries and has been associated with the discovery of germ theory o f disease and the fundamental mechanisms of infections. However, as critics point out fails to address the possibility of common or overlapping symptoms among multiple diseases (Bury, 2005) Still, medical historians suggest that by 1920, the medical model had
33 overall attitude to ward health (Lawrence, 1994) The modern medical model presented an individualistic view of health, with doctors the only appropriate source to turn to for help with health problems. Not interested in the possibility of contributing circumstances at work or home, the modern doctor fo cused diagnoses on the individual patient and what went on within the body (Bury, 2005) T his model placed medical professionals who try to restore these out of control (Whitsitt, 2010, p. 112) Thus, when it came to diagnosis, authority over health matters resided in a as contaminating the diagnostic process (Bury, 2005, p. 4) furthermore may be why the medical model has been regarded critically in sociological literature (Bury, 2005; Conrad & Barker, 2010; Whitsitt, 2010) The biggest concern over the dominance of the modern medical model was that it drew attention away from the wider determinants of health and social inequality to se rve the interests of medicine rather than those of patients (Bury, 2005; Conrad & Barker, 2010) However, in some respects, t he medical model of health seems natural. After all, people generally only seek out doct ors when they suspect something may be medically wrong or they are feeling unwell. Nevertheless, complicating matters is the knowledge that people who have a disease do not always perceive themselves as unhealthy. Today, the medical model is as likely to r ecognize the complex or unknown origin of a disease as it is to pinpoint a specific cause (Bury, 2005) As such, diagnosis in some cases becomes probabilistic versus definitive
34 because doctors are realizing the wider influences lives. Socio C ultural Experiences of Illness As discussed in the previous subsection, the medical model is based on certain specific symptoms present in a pathological condition that necessitate diagnosis and t reatment. In the last 50 years or so, medical sociologists have focused on the social construc tion of illness in effort s to increase medical understanding and awareness of the social dimensions of illness (Conrad & Barker, 2 010) At the heart of the social constructionist approach are the widely recognized conceptual distinctions between the biological condition of disease and the social meaning of illness (Eisenberg, 1977) While the medical mode l assumes diseases are universal and unchanging over time, the social constructionist s emphasize how cultural and social factors shape meaning s and experience s of illness. The basic issue between the lay experience of health and illness and th e traditional medical model is whether health and illness are relativistic phenomena identified and labeled according to cultural values and social norms (Kellert, 1976, p. 222) I ll health cannot be defined in simple terms of disease which can exist in the absence of feeling ill. Similarly, symptoms such as headaches, faintness, or nausea can be present in the absence of disease (Boyd, 2000) The foun dation s of the social constructionist approach to illness perhaps were established in the writings of early sociological thinkers such as Emile Durkheim, Karl Manheim, and W. I. Thomas. However, Conrad and Barker (2010) suggest some of the most important i ntellectual foundations of the social construction of illness stems from sociological research conducted in the 1960s especially social problems theory,
35 symbolic interactionism, and phenomenology Social problems theorists posited that by social groups within particular social contexts led to the labeling of behavior as deviant, or a social problem (Conrad & Barker, 2010, p. S68) In other words, social problems are societal induced conditions that h arm any segment of the population. Social problems also are related to acts and conditions that violate societal norms and values. In applying these basic tenets to illness, medical sociologists highlight ed the manner in which certain behaviors and experie nces were defined as medical conditions and how those definitions serve d as a type of social control (Zola, 1972) that individuals actively participate in the construction of their selfh ood thro u gh social interaction also seemed especially suit ed to the exploration of illness as experienced within the context of daily life (Conrad & Barker, 2010) Similarly, medical sociologists adopted phenomenological p rinciples of meaning how individuals make sense of their illness, how they c ope with physical and social restrictions, and how they deflect self erosion in the face of those restrictions (Conrad & Barker, 2010, p. S68) Ideas surrounding the social construction of illness also advanced in the 1970s with the publication of Profession of Medicine According to Conrad and Barker (2010), was arguing that (p. S68) Thus illness and disease are evaluative categories based on social ideas of acceptability and desirability, or rather, in this case, non acceptability and undesirability.
36 The lay concept of illness is more subjective than disease, w ith individual health perceptions and experiences stemming from the same social factors that affect disease. While some people may choose to seek out medical care for help with symptoms and conditions, others with the same health issues may choose otherwis e (Brown, 1995) at least until it is compromised by illness (Bury, 2005, pp. 7 8) Lay concepts of illness to include thoughts on the severity of and appropriate treatment for illness. However, patients and physicians often differ in their views on appropriate trea tment. For example, physicians refute the common notion among many patients that antibiotics are the best course of treatment for the common cold or flu. Meaning of illness is also important in the lay concept. When people fall ill, they want answers to th e why and how of the illness. And, when the illness is serious, the search for answers becomes even more urgent, involving the patient at the deepest level (Helman, 1981) H ealth, illness, and disease are not always mutually ex clusive in lay thought (Brown, 1995; Bury, 2005) People want to feel and be seen as healthy. For instance, an individual with diabetes may perceive herself or himself as healthy despite having a serious medical condi tion. Also, the experience of illness may not be the same in any two people (Brown, 1995) One person with a cardiac condition might limit or restrict physical activity, regardless of medical necessity. Conversely, another with the same condition might initiate healthier eating habits and a reasonable exercise regimen. While race, sex, ethnicity, and nationality have been shown to account for variations in individual health perceptions, general differences stemming from broader social
37 perceptions and interactions also exist (Zola, 1966) Furthermore, people feel and act on symptoms in many non medical ways. seem illogical to the physician, but to the patie nt, the refusal to comply might be a well reasoned attempt to avoid medical and social side effects that might affect personal or work life (Conrad, 1985) Such thinking on the part of a patient also could be seen as a dem onstration of the meaning an individual ascribes to an illness. In other words, the (Conrad & Barker, 2 010, p. S71) Finally, the lay concept suggests that health is a multifaceted dimension of life comprising a pool of vitality, fitness, and strength. Individuals draw on this reserve to pursue their goals and actions. Sociologically, health is both an a ttribute and a relation, involving biological and social factors. This view of health and illness is dynamic, changing across biographical and historical time. Good health and poor health experiences are contextual and can be influenced by circumstances of birth and stage of life (Bury, 2005) Philosophical and Theoretical Frameworks Qualitative research is a form of social inquiry steeped in the interpretive approach to social reality and the description of the lived experienc es of people (Creswell, 2007; Holloway & Wheeler, Nature of qualitative research, 2002) Unlike the positivist approach, which focuses on the universal laws of natural science, the interpretive view stresses that real ity comes from shared meaning among people in any particular environment. A number of methodological approaches to qualitative inquiry exist (Creswell, 2007) For example, ethnographers focus on culture and customs, most often through participant observation. Phenomenologists make actual lived experience the
38 basic data of reality, typically gleaned from in depth interviews. Grounded theorists investigate social processes and interaction generally through interviews field observ ations and document analysis Regardless of the approach the underlying philosophy of each is the same: (Holloway & Wheeler, Nature of qualitative re search, 2002, p. 3) This study was approached from the philosophical standpoint of phenomenology and the theoretical frameworks of grounded theory, symbolic interactionism, and framing all of which are discussed in the following subsections. Chapter 3 will address in more detail the methodological processes of grounded theory and framing Phenomenology Phenomenology as a qualitative research approach has been used in a number of ways and fields of studies (Creswell, 2007) V an Manen (1990) states that some In their handbooks on qualitative research, Denzin and Lincoln (1994 ) address phenomenology as an inquiry paradig m, an interpretive theory Moustakas (1994) uses phenomenology as a research methods framework. Nonetheless whatever the approach or field of study, the roots of phenomenology can be traced to philosoph ical streams of the 19 th and 20 th centur ies principa lly in the transcendental ideas of Edmund Husserl (Creswell, 2007) and the hermeneutics thinking of Martin Heidegger (Holloway & Wheeler, Nature of qualitative research, 2002) transcende ntal phenomenology considers t he essential meanings of individual experiences truth is ascertained through focused consciousness.
39 what appears in the world is a pr (Moustakas, 1994, p. 27) While phenomenology is more interpretive, focusing on language and communication, usually by l ooking at the structure of texts (Moustakas, 1994) The epistemological question that in part underlies the phenomenological philosophy is: How do we know what we know? Phenomenological philosophy is further connected to ontol ogical questions concerning the nature of reality and our knowledge about how things really are (Holloway & Wheeler, Phenomenology, 2002) The word p s from the Greek word or appe a r. (Moustakas, 1994, p. 26) Although p henomenology as a modern movement traditionally begins with Husser l the work of an earlier philosopher and psychologist Franz Brentano provided inspiration especially in terms of the key notion of intentionality, or consciousness (Holloway & Wheeler, Phenomenology, 2002) view, objects always exist as long as individuals perceive them to exist. However, Husserl considered that objects perceived to exist may be imaginary and not exist at all (Moustakas, 1994) Regardless, both agreed that this c onsciousness what people experience and how is directed toward some object whether the object exists or not. I ntentionality is comprised of two concepts related to meanings: noema and noesis Noema refers to the experience or phenomenon In other words what is thought about N oesis is the initial understanding of the phenomenon, or the underlying meaning of the experience (Moustakas, 1994) Husserl emphasize d knowledge rooted in meanings. In
40 reflecting in what is seen, mean ings that have been concealed come to light. Perceptual shifts (horizons) can occur, depending on the frame of reference, angle, or mood. The challenge here, as Moustakas (1994) points out, is to look, look again, and keep looking and reflecting to obtain com plete descriptions. (Moustakas, 1994, p. 53) Thus, the external perception of noema and th e internal perception of noesis must be unified to arrive at the essence of a phenomenon. Two other concepts important to phenomenology intersubjectivity and life world were developed by students and colleagues of Husserl (Co hen, Kahn, & Steeves, 2000) According to Husserl, intersubjective experience is essential someone or something and in the commitment to copresence and community as a way (Moustakas, 1994, p. 57) E mpathy for others opens the door to t he i ntersubjectiv e world with the way of making sense of the experience essentially intersubjective. T he concept of life world means the world that is lived an d experienced actions and interactions are informed by their understanding (interpretation) of the complex meanings that make up daily world existence where the ordinary and commonplace are rarely noticed. There is no inner man, man is in the world, and only (Merleau Ponty, 1962, p. xii) In other words, life her than some inner world of introspection. Heidegger a onetime assistant to Husserl is credited with developing the notion of concept of personhood, to explain the nature of being and
41 existence in time (Ho lloway & Wheeler, Phenomenology, 2002) For Heidegger, time (Leonard, 1994, p. 54) the perception of time in the now (present), the no longer (past), and the not yet (future) (p. 54) phenomenology into an interpretive philosophy, serving as the basis for hermeneutic inquiry or the interpretation of meaning (Holloway & Wheeler, Phenomenology, 2002) Today, researchers point to a ny number of philosophical arguments in undertaking a phenomenological study. For example, V an Man en (1990) considered the lived experiences of persons, the view that these experiences are conscious ones, while Moustakas (1994) emphasized the development of descriptions of the essences of experiences not explanations or analyses. In a broader, more ge neral sense, S tewart and Mickunas (1990) considered phenomenology, along with logical or linguistic analysis, one of the two major alternatives to contemporary philosophy However, as Creswell (2007) notes, phenomenology essentially is steeped in four phil osophical perspectives. They are: A return to the search for wisdom, which is t he original task of philosophy. A suspension of judgment about what is real until certainty is proven. An intentionality of consciousness, where c onsciousness is always directed toward an object. The refusal of subject object dichotomy, where the reality of an object is only perceived within the meaning of the experience of the individual.
42 Grounded Theory and Symbolic Interactionism Grounded the ory moves beyond the descriptive aspect (Creswell, 2007, p. 63) Broadly defined, a theory (Littlejohn, 2002, p. 19) Theoretical propositions are built on concepts that are used to categorize label, or group observations events and things. Without concepts, neither proposi tions nor theory can exist (Strauss & Corbin, 1994) The aim of grounded theory is to produce embedded in the context of thick description that cap tures the substantive content of a study (Strauss & Corbin, 1994, p. 278) These theoretical relationships or propositions, are seen to capture the substance of a study far better than the natural science form of propositional presen ta tion (Strauss & Corbin, 1994, p. 278) rather is generated (grounded) in data collected from study participants who se views on the ex perience help shape the theory (Creswell, 2007, p. 63) Sociologists Barney Glaser and Anselm Strauss developed grounded theory in 1967. Their collaboration may have been a bit unusual for the time because of their diffe ring approaches to research. Glaser was trained in quantitative social research methods, and Strauss, in the qualitative research tradition (Jeon, 2004) Still, they entered into their initial partnership from the same mindset : to bridge the gap between theory and empirical research (Strauss & Corbin, 1994) deductive methods of inquiry then prevalent in sociology (Strauss & Corbin, 1994, p. 275) Essentially, in the thinking of Glaser and Strauss, a priori theoretical constructions of sociology were
43 or social (Creswell, 2007, p. 63) While Glaser and Strauss ultimately disagreed about the meanings and procedures of grounded theory the approach has become increasingly popular in the social sci ences, including nursing, education, and psychology, and more recently, in communications, particularly health communications (Creswell, 2007) Grounded theory methodology will be discussed in greater detail in Chapter 3. In la rge measure grounded theory is derived from the theoretical fram ework of symbolic interactionism that sees society as the product of individuals interacting with each other. (Holloway & Wheeler, Grounded theory, 2002) S ymbol ic interactionism model of the person is active rather than passive. Individuals go about their everyday lives, acting toward, responding to, and influencing others through language, appearance, and gestures of members of their group or community. These perceptions serve as justifications for their conduct, which is only contextually understood. Consequently (Holloway & Wheeler, Grounded theory, 2002, p. 153) The groundwork for symbolic interactionism was laid in the early 1900s by the social psychologist George Herbert Mead who held the beings go through a continual process of adaptation in the constantly c hanging social world, and that the existence of a mind through which contemplation of a situation (Jeon, 2004, p. 250) The term symbolic interactionism was actually coined in the 196 0s by sociologist Herbert Blumer who, in ism not only as a sociological theory but also as a research approach (Jeon, 2004) Symbolic
44 interactionis t research first entails an explication of the development and nature of meanings represented in interactions between or among individuals. T hese meanings can only be further understood through contextual interpretation (Sch wandt, 1994) The concept of meaning within particular contexts is a major tenet of symbolic interactionism. In this regard symbolic interactionism has much in common with phenomenology or, particular viewpoint of a situation (Jeon, 2004) Human society, social interaction, objects, the actor, action, and the interconnection among actions are all concepts Blumer termed root images of symbolic interactionism (Jeon, 2004, p. 291) Blumer linked these basic concepts to social interactions taking place between and among Accordingly, meaning is a social product of social interaction. In the Blumer Mead reflection and interpretation (Schwandt, 1994, p. 124) The model, therefore, rests on three premises The first is that people act based on the meanings they hold for things Second, individual meaning of such things arises out of social interaction or communication, with others Thus, social interact ion is symbolic because communication is made through language and symbols. And third, individual meanin gs are (Schwandt, 1994, p. 124) Framing Theory In a broad sense, framing refers to the way people perceive, organize and make sense of events taking place around them and issues that affect their daily lives (Reese, 2001) Framing is founded in two broad conceptual areas (Borah, 2011) with sociologist
45 Erving Goffman credited with introducing the framing approach, and psychologist Gregory Bateson believed to have originated the metaphor (Reese, 2001) In the last decade or so, f raming has seen increased usage, especially in research studies in communication, health, sociology, political science and public relations (Borah, 2011; Reese, 2001; Van Gorp, 2007) A number of defi nitions exist related to frames (Borah, 2011; Reese, 2001; Van Gorp, 2007) Goffman (1974) In G immediate experience as well as in the world at large (p. 56 ) Similarly Entman (1993) (p. 52) Cappella and Jamieson (1997) further argued that framing refers to placing more attention on certain features of a phenomenon while minimizing other features. In the same manner, Gamson and Modigliani (1994) argued that a frame functions (p. 376) In this context, a frame actively constructs meaning, not necessarily in organizing information. While news reporting does present information in a factual manner, the process much like telling a story about the world can be explained by the concept of framing (Gamson, 1989) The same event or issue may be understood in different ways through the different frames used to define that event or issue (Gandy Jr., 2001) Thus,
46 framing affects how a story is told and influences public perception (Bullock, Wyche, & Williams, 2001; Shih, Wijaya, & Brossard, 2008) Framing has been used in studies on media coverage on a wide range of issues, such as po litics (Cappella & Jamieson, 1996; Scheufele, 2000) technological hazards (Gamson & Modigliani, 1989) stem cell research (Nisbet, Brossard, & Kroepsc h, 2003) global warming (McComas & Shanahan, 1999) wars (Dimitrova & Strmbck, 2005) terrorist acts (Argothy, 2003) and health ( Pratt, Ha, & Pratt, 2002; Shih, Wijaya, & Brossard, 2008) Media frames help determine whether people notice, understand, or remember a problem and how they evaluate and choose to respond to it (Entman, 1993) Indeed, accordi Excellence in Journalism and the Pew Internet & American Life Project, Americans turn to newspapers both in print and on the W eb more often than any other source for community news and social services information. Newspapers tie with the Internet as the top source for news about housing, schools, and jobs and with t elevision as the main source for local political news. Thus, the media play an important part in determining how people define so cial issues. Pew Research Center surveys also have found that 80% of Internet users 59% of U.S. adults look online for health information, with specific diseases or conditions and treatments or procedures among the most commonly research ed topics (Fox, 2011) The formation of a udience frames how news frames influence information and decision making processes also have been examined (Borah, 2011) Drawing heavily on risk gain r esearch, t (Borah,
47 2011, p. 248) Kahneman and Tversky (1984; 1979) demonstrated this equivalency concept in studies using the same message presented in terms of losses versus gains. These studies showed that individuals were more likely to take risks when losses were highlighted and tended to back away from risk when gains were emphasized. Conversely, information in (Borah, 2011, p. 248) Framing schol ars working from this approach (Druckman, 2001) accentuating certain considerations in a message can influence individuals to focus on (Borah, 2011, p. 248) Framing analysis may involve a qualitative inductive or quantitative deductive approach (Semetko & Valkenburg, 2000) The goal of the inductive approach is to identify all possible frames through a loo sely set of defined presuppositions of the frames (Semetko & Valkenburg, 2000) Th e inductive approach allows significant themes within data to emerge outside the constraints of structured methodologies. In contrast, the deduct ive approach aims to examine the occurrence of frames in the news by predefining the frames, or using a strong set of presuppositions (Semetko & Valkenburg, 2000) The deductive approach requires that frames be known beforehand which means researchers must have a clear idea of the frames likely to be encountered in a study. Thus, deductive studies are limited to already established frames, and, therefore, are not as flexible as inductive studies in the identification of new and emerging frames (Matthes & Kohring, 2008) Because little is known about how the media have framed the debate on fibromyalgia or what influence media messages related to fibromyalgia have had on
48 those most affected by the con dition, this dissertation seeks to put into context the ongoing public conversation about fibromyalgia and to increase understanding of the perceptions of the potential significance a fibromyalgia diagnosis holds for women with the condition This will be achieved through in depth interviews with women fibromyalgia patients and an applied textual frame analysis of editorial content in magazine articles dating from 1980 when the term fibromyalgia was first used to 2011 when the articles were collected The s pecific research questions guiding this inquiry are: How is fibromyalgia framed in magazines dating from January 1, 1980 to December 31, 2011? What meaning do women with a diagnosis of fibromyalgia ascribe to their experiences? How does the framin g of fibromyalgia relate to the understanding women have about their condition? The methodological approach es used to address these questions are grounded theory and framing, which are discussed in detail in the following chapter.
49 CHAPTER 3 METHODOLOGY The purpose of this research was to explore, within a cultural context, how women living with a diagnosis of fibromyalgia conceptualize messages about their experiences In doing so, qualitative methods were used to gain insight into the environmental clim ate in which the women participants in this study came to understand, respond to, and make sense of their illness. Th principal method entailed grounded theory which served as a guide for collecting and analyzing data gleaned from a qualitative framing analysis of media texts and in depth interviews with women fibromyalgia patients. These methods are outlined in more detail following brief discussions on the rationale for the use of qualitative inquiry and grounded theory in this dissertation. Ju stification for Qualitative Inquiry Social research is broadly based on two underlying and sometimes conflicting assumptions: the positivist and interpretivist paradigms. Steeped in the beliefs of universal laws, objectivity, and neutrality, the positi vist, or chiefly quantitative, approach employs the natural sciences model of theory and hypothesis testing. Positivist aligned scholars seek causal relationships and focus on prediction by controlling the theoretical framework, sampling frames, and resear ch structure (Holloway & Wheeler, Nature of qualitative research, 2002) As such, the positivist scientific model moves from the general to the specific, with a main aim of testing theory. In contrast, the interpretivist, or q ualitative, view emphasizes understanding the human experience, or the manner in (Holloway & Wheeler, Nature of qualitative research, 2002, p. 7) Objectivity and neutrality though neither the aim nor the goal of qualitative research are impossible
50 to achieve in the interpretivist qualitative paradigm because values and interests are part of the research process. In qualitative research theoretical ideas are generated from data, which necessitates an inductive approach moving from the specific to the general and from the data to theory or description. The appropriate research design quantitative positivist or qualitative interpretivis t depends on the topic or question under study. While quantitative approaches are best att empt to explore a complex set of factors surrounding some central phenomenon. In other words, qualitative analysis seeks a different type of knowledge than that of quantitative inquiry (Creswell, 2007) Qualitative research is often characterized by an emergent design (Charmaz, 2006; Glaser & Strauss, 1967; Strauss & Corbin, 1998) where a researcher proposes a flexible study plan based on concepts generated from pa rticipants as well as the gathering methods and analytic strategies are freely adaptable qualitative research is the use of inductive data analysis, m eaning critical themes emerge from the data (Charmaz, 2006; Creswell, 2007; Denzin & Lincoln, 1994) Here, meani ngful categories, and communicate this interpretation to others. Much of the research on fibromyalgia has used quantitative methodologies, primarily randomized clinical trials focusing on drug and non drug treatments (Bennett, Kamin, Karim, & Rosenthal, 2003; Castel, Salvati, Sala, & Rull, 2009; Castro Sanchez,
51 Mataran Penarrocha, Quesada Rubio, Granero Molina, & Moreno Lorenzo, 2011; Rossy, et al., 1999; Sim & Adams, 2002) Outside of descrip tive literature reviews, few studies have examined the question of fibromyalgia qualitatively No studies have looked at the media aspects of the fibromyalgia question and no studies appear to have been focused on the United States. One phenomenological s tudy conducted in Scandinavia used focus groups to explore the benefits and burdens of a diagnosis of fibromyalgia, given its uncertainty (Undeland & Malterud, 2007) However, the study failed to explicitly state a theoretical perspective or framework, suggesting a lack of rigor on the part of the researchers. A similar study employing semi structured interviews with fibromyalgia sufferers was conducted in the United Kingdom (Madden & Sim, 2006) Qu alitative methodology is most appropriate for this dissertation because the research question seeks to gain a greater understanding of the personal experiences of women and their fibromyalgia status As McCracken (1988) has noted: Without a qualitative understanding of how culture mediates human action, we can know only what the numbers tell us. The long qualitative interview is useful because it can help us to situate these numbers in their fuller socia l and cultural c ontext. (p. 9) Justification for Grounded Theory As defined by original proponents Glaser and Strauss (1967) grounded theory is both the product and method of research insofar as theory is derived directly from the da ta under examination. This study employed grounded theory methodology in an effort to present a detailed portrait of the experiences of women with a diagnosis of fibromyalgia and the meaning they ascribe to their experiences Grounded theory methods entail a systematic, yet flexible, set of guidelines and procedures for collecting and analyzing data. The main aim of this process is to produce formal, substantive
52 theory about the behaviors that shape social interactions (Charmaz, 2000; McCallin, 2003; Schwandt, 2001) Hence, the primary outcome of a grounded theory approach is a theory with prescribed categories of information such as a central phenomenon, causal conditions, strategies, context, and cons equences. Grounded theory methodology is best suited for studying processes that are not already explained by theory and where little is known (Creswell, 2007; Goulding, 1998) or in this case, the influence of the fib romyalgia debate on the women who have the condition. Goulding (1998) which has its roots in symbolic interactionism, and as such, language, gestures, expr (pp. 51 52) Designed for building theories in sociology (Glaser & Strauss, 1967) the early proponents of gr ounded theory have spoken to its usefulness for other social sciences such as anthropology, business, education, social work, health, and communications (Creswell, 2007; Glaser B. G., 1978; Strauss & Corbin 1994) Hence, grounded theory serves the purpose of this study, which is concerned with questions centered on the social construction of meaning and how individuals with an ill defined and debatable illness negotiate and come to terms with their meanin gs over time through interaction with others. Since its introduction in 1967, grounded theory researchers have adopted differing approaches to the methodology, with much discussion focused on the characteristics and definition of grounded theory (Graham & Thomas, 2008) Bernard and Ryan (2010) inductive. However, Strauss, working with Corbin, later moved towa rd a more deductive
53 approach, introducing the need for verification (Strauss & Corbin, 1998) More recently, Charmaz (2006) developed an alternative constructivist grounded theory approach, which differs from traditional g rounded theory inasmuch as participants and the researcher produce data together, facilitating the co construction of meaning and These various approaches share common key char acteristics of grounded theory studies, namely, constant comparative analysis and theoretical sampling. However, differences exist in the logic for justifying, or explaining, the methods (Rennie, 1998) As stated earlier, Glase (Bernard & Ryan, 2010) In contrast, Strauss and Corbin employ deduction with a focus on hypothesis testing and axial coding. Rennie (1998) explained that Str auss and Corbin modified the method in the following areas: under study are accepted as legitimate empirical data; hypothesis testing is made integral to constant comparison; consideratio n of the conditions influencing the phenomenon should not be limited to those indicated by the data themselves; and the application of an axiomatic schema that converts all social phenomena into process is made mandatory. (p. 105, emphasis in original) Str which Glaser suggested forces the data to conceptual descriptions and incorporates the verification methods that the grounded theory approach was designed to avoid (Babchuk, 2009) Conversely, Charmaz (2006) argued that the grounded theory methodologies of Glaser and Strauss and Corbin were highly positivistic as evidenced in the importance they placed on objectivity in the process and their concern wi th verification of findings. Charmaz (2006) proposed a constructivist grounded theory that
54 employed a set of guidelines rather than a set of rules that emphasized interpretation over discovery of theory (Babchuk, 2009) Cha rmaz (2006) explained: In the classic grounded theory works, Glaser and Strauss talk about discovering theory as emerging from data separate from the scientific observer. Unlike their position, I assume that neither data nor theories are discovered. Rather we are part of the world we study and the data we collect. We construct our grounded theories through our past and present involvements and interactions with people, perspectives, and research practices. (p. 10, emphasis in original) However, one should grounded theory is closely related to the original method of Glaser and Strauss (1967), particularly in relation to the flexibility and adaptation of grounded theory strategies. A constructivist approach to grounded theory entails the construction of knowledge and meaning to make sense of experience and is continually modified and tested in light of new experiences (Schwandt, 1994) Because this study also adopts a social constructivist perspective, the constructivist grounded theory approach was employed in data collection, analysis, and understanding of the phenomenon. The methods proposed by Charmaz (2006) represented the set of guiding principles and practices to understand how women fibromyalgia patients construct meaning and make sense of their experience. Methods Grounded theory is characterized by a simultaneous and ongoing process that entails data collection and analysis, referred to as theoretical samplin g; theoretical sensitivity, or the constant comparison method; coding, categorizing, and memo writing; and theory generation (Jeon, 2004) For Charmaz (2006), discovery of grounded theory begins with a research problem and open ing research questions, followed by initial data collection and data coding to identify emergent categories. Constant comparison and
55 simultaneity are essential to the process, which requires flexibility and adaptability on the part of the researcher (Jeon, 2004) An audit trail in the form of memos detailing decisions made and actions taken are also important, especially in situations where procedural modifications may be needed (Charmaz, 2000; Jeon, 2004) An inherent weakness of qualitative research pertains to validation, or the evaluation of trustworthiness (Angen, 2000) In other words, do the findings accurately represent the phenomena under study? One commonly used and proven method to improve trust in qualitative studies is triangulation of data, meaning the use of multiple methods to collect data and study a phenomenon (Creswell, 2007; Holloway & Wheeler, Nature of qualitative research, 2002) To ensure trustworthiness of findings in this study, data were first collected through a qualitative content (framing) analysis of magazine stories on the subject of fibromyalgia followed by in depth interviews with female f ibromyalgia patients in the United States. Qualitative Content (Framing) Analysis Qualitative content (framing) analyses seek to examine how particular issues are depth or (Hertog & McLeod, 2001, p. 147) The les The analysis further for questions asked in subsequent interviews with the women taking part in the study. Additionally, a qualitative framing analysis acted as a comparative trustworthiness (credibility) assessment for the study.
56 (Ands ager & Powers, 2001, p. 164) magazines (Kessler, 1989) which provide a richer context for information than the ephemeral television news (Andsager & Powers, 2001) Moreover, magazines, especially those targeted at women, often combine elements of news and and health risks (Andsager & Powers, 2001) This study applied textual frame analysis of headlines and story (editorial) content to determine frames employed in news and feature articles related to fibromyalgia published in periodicals dating from January 1, 1980, to Dec ember 31, 2011. This time frame was chosen because it marks a period of growing recognition of the illness by physicians and researchers 1980, with defining criteria for diagnosis identified in 1990 (Inanici & Yunus, 2004; Wallace & Wallace, 2003) December 31, 2011, reflects the end date of collection of articles for analysis. Such an analysis was thought important to provide a historical context for th e question of fibromyalgia and its status as a condition. Articles were identified using the and the headlines and text was made of each of the articles. Pictures and graphics where available also were examined. The articles were located in the holdings of university and public libraries, as well as the online databases Academic Search Premier, Gale Power Search, and LexisNexis Academi c. Photocopies were made of the articles found
57 in bound, print copies of the magazines located on the shelves of unive rsity and public libraries (n=17 ). Articles accessed through online databases were printed (n= 17 ). Some of the online articles were port ab le document format (pdf) (n=3 ), which accommodates the inclusion of pictures and graphics. Articles in text only format (html) did not include pictures or graphics (n= 14 ), although references in the text to such were made as appropriate. After all articles were located, photocopied, and printed, they were numbered from 1 to 34 To ensure relia bility, 20% of the articles (n=7 ) were coded by the researcher and one other graduate student unfamiliar with the study but trained in framing analysis method Reliabi lity achieved was 0.98 using (Neuendorf, 2002) A standard code book (Appendix A) and coding worksheet (Appendix B) were developed for use in documenting, in part, background of the authors of and sources quoted in the articles, for example, medical professionals, health journalists, fibromyalgia patients, associations, research studies; emphasis of the articles, such as identification of symptoms or treatments; references to fibromyalgia debate and whether the c ondition is portrayed as a physical or mental illness; recommendations mentioned and whether the articles offer hope or discouragement; and the impact of media coverage on fibromyalgia patients, such as economic and quality of life. Each article was review ed at least three times. The first read was to scan the article and document on the coding worksheet basic background on the articles. Items noted here were: (1) number of article; (2) where the article was obtained, such as library or database; (3) articl e format, i.e., pdf or html; (4) whether the article was accompanied by any photographs or graphics; (5) name of the magazine in which
58 article appeared; (6) date of publication; (7) length of article; and (8) headline or title of article. In the second rea d, the article was reviewed in its entirety to determine the main topic, secondary topics, and encompassing frames The third read involved a line by line examination of the article to identify sentencing, wording, phrasing, and sourcing suggestive of the the worksheets were reviewed and analyzed to determine repeated arguments, frames and occurrences. No pre determined frames were used. Instead, frames emerged from close reading of the content to ensure the identification of all possible frames and to eliminate unintentional research bias by pre selecting a limited number of frames. Colored highlighting pens were used to mark each frame and its corresponding frame in the article (as iden tified in the coding worksheet). In the end, the researcher was able to go through all the printed and photocopied articles to see how often each color was used. The most used colors also reflected the most used frames. The number of articles in which each frame appeared and the number of times in each article a frame was referenced were recorded. Pencil written notes were used before the colored highlighting of frames to avoid marking frames in one color that later proved to reflect two separate frames. In D epth Interviews In depth interviews have been employed in a number of qualitative studies not only in the social sciences but also in the areas of health communication and public relations (Aldoory, 2001; Tsetsura, 201 1) among others. In qualitative research, the interview is a form of discourse shaped and organized by asking and answering questions. An interview is a joint product of what interviewees and interviewers talk
59 about together and how they talk with each other. The record, or transcript, of the interview and subsequent analysis and interpretation is a representation of the conversation. An in depth interview is a useful technique to intensively explore the experiences and life world of an individual (Charmaz, 2006) Gaskell (2000) described to depth interview explores the personal world view of the interviewee in detail. This study used in depth interviews to enhance our understanding of the complex question of fibromyalgia by illuminating this experience as narrated by women who have been diagnosed with the condition. IRB approval Conducting interviews with sensitive populations often poses a number of proble ms for qualitative researchers, most notably ensuring confidentiality of private information shared by interviewees. While a diagnosis of fibromyalgia would be considered protected health informatio n requiring authorization under the Health Insurance Portability and Accountability Act (HIPAA), this communicat ion study falls outside the HIPAA regulated health sciences research area Nonetheless, the research topic under study entails sensitive information that potential interview participants may want to keep private. As a way to ensure privacy, t he Institution al Review Board at the University of Florida recommended no signature be required on the informed consent document (Appendix D). V erbal acknowledgment to be interviewed was the only consent requested for participation in the study.
60 Pilot interview Before t he actual research project got under way, a pilot interview was conducted to perfect the prompting/probing skills of the interviewer. The pilot interview also served as a test of whether the qualitative methodology, the interviewing method, and proposed qu estions (Appendix C ) were suitable, logical, and useful in meeting the primary objective of the study. Feedback from the interviewee further helped to inform the interviews in the main study. Thus, the pilot interview enhanced trustworthiness of the resear ch project. The pilot interviewee was a female fibromyalgia patient in her mid 50s living in the United States, meeting the requirement for participation in the main study. The name of the pilot interviewee came from the Nat ional Fibromyalgia Association W eb site. Contact was made via an email address found in a directory. The initial message to the interviewee first stated how her name and email address was obtained and then introduced the researcher as a doctoral student in health communication before pro viding some background on the dissertation research and the specific interest in the treatment of women with fibromyalgia by their peers, families, friends, and medical In keep ing with the interview protocol for the main study, the researcher went over the informed consent document (Appendix D ) with the pilot interviewee by reading the form aloud to her and emphasizing the voluntary and confidential aspects of the study througho ut the review. The following sections detail more specifically the interview processes used in this study.
61 Theoretical s ampling The scientific rigor reliability and validity of any research project hinges in part on the sampling strategies used. While sampling strategies in quantitative research have received much more attention, sampling in qualitative studies and specifically in grounded theory research is important all the same (Jeon, 2004) The approach to sampling data collection for generating theory whereby the analyst jointly collects, codes, and analyzes the data and decides what data to collect next and where to find it, in order to d (Glaser 1978, p. 36) In this vein, Charmaz (2006) explained that grounded theorists construct data through observations, conversations, and materials related to the phenomenon under study. The type of data obtained depend s on the topic under study and access to primary data (Charmaz, 2006) Qualitative researchers face several challenges in collecting data, mainly stemming from difficulties in gaining entry to an organization for observat ions or potential ethical issues surrounding the identification of participants to interview and the type of information sought (Creswell, 2007) In grounded theory research using interviews participants must agree to take par t in the study. Thus, to get rich data and trust and credibility, and get people to respond (Creswell, 2007) Creswell (2007) further explai ned that grounded theorists typically begin with a homogeneous sample of individuals who have experienced the process or phenomenon under study. Following this practice, this study used the Support Group Directory of the National Fibromyalgia Association a s a starting point for identifying study participants. The focus of this study
62 was 20 to 70 year old women fibromyalgia patients living in the United States. Therefore, only U.S. fibromyalgia support group leaders were contacted. In keeping with the prin ciple of theoretical sampling, not all support group leaders in every state were approached at the same time. Initially, randomly selected support group leaders from each of the 50 states (one leader from each state for a total of 50 initial contacts) were approached by email (Appendix E) and asked to pass along information about the study to eligible group members possibly interested in taking part in the study through in depth interviews These initial contacts with support group leaders yielded 10 respon ses (20%) with 29 support group members replying with involves recruiting people and information that may help illuminate the boundaries and categories of the phenomen on under study (Charmaz, 2006) Theoretical sampling in this manner continues until saturation is reached, or until no new insights can be gained through observation or interviews (Charmaz, 2006; Goulding, 1998) For this study, saturation was reached at 8 interviews with support group members. An additional 4 interviews were conducted to confirm and expand on the findings. Therefore, this study includes insights from a tota l of 1 2 respondents from 7 states. Recruitment and interview process When fibromyalgia support group leaders were asked via email to share information about the study with group members, they were provided with portable document format (pdf) documents cont aining background material that included eligibility for participation in the study and the name and contact information of the researcher (Appendix F ) as well as an informed consent form (Appendix D ) advising potential interviewees of the purpose of the study, the use of their information, and their
63 right to confidentiality and to leave the study at any point Because of the sensitivity of the topic under study and to ensure privacy of interviewees, no signature on a consent form was required. Verbal agre ement for the interview represented acknowledg ment of participation in the study. The informed consent process and the personal communication with support group leaders served as an initial effort to establish trust and rapport. All questions about the stu dy were answered before acknowledgment and participation in the interview. The researcher began the interview after verbal agreement was given. All interviews were recorded with the knowledge of the interviewees. ose ties with family members and friends who have fibromyalgia also facilitated building rapport with the interviewees and knowing how to manage the interviews. Familiarity with the uncertainties of fibromyalgia symptoms allowed for understanding and accom modating of changes in dates and times of interviews and in providing adequate reminders and follow ups as necessary. I n depth interviews were conducted with women diagnosed with fibromyalgia between the ages of 20 and 70 and living in the United States. I n depth interviews facilitate deep exploration of the topic under study and are valued as a useful method for interpretive research (Charmaz, 2006) The interviews were semi structured, allowing the researcher the f lexibility to bring up questions during the interview based on A question framework was designed to guide the interview (Appendix C). However, as stated, additional questions were asked as they came up in the conversation. When possible, the interviews were conducted in person. Still, geographic distance made in person interviews impossible in some cases. Thus, 1 1
64 interviews were conducted by telephone and 1 in person. The average length of the interviews was 60 minutes. To prot ect the confidentiality of interviewees during data analysis they were assigned code names and numbers based on their geographical location and state postal abbreviation and the order in which they were interviewed For example, AZ would represent intervi ewees from Arizona; WA, Washington; FL, Florida, and so on. If two people were interviewed from Arizona, the first interview would be coded as AZ1 and the second, AZ2. As suggested by Glaser (1978), data collection and analysis occurred simultaneously in t his study. Coding, categorizing, and memoing All interviews were transcribed immediately, with coding taking place after each simultaneously categorizes, summarizes and accou (Charmaz, 2006, p. 43) During the analysis, the researcher used constant comparison to identify categories and find relationships among these categories with the aim of identifying emergi ng conceptualizations to formulate the theory (Jeon, 2004) For Charmaz (2006), grounded theory coding entails an initial phase in which each line or segment in the text is named and a focused phase, where the most significant codes are sorted, synthesized, and organized. Initial coding in this study was conducted line by line, leading to the more selective, or focused, coding that facilitates theoretical integration (Charmaz, 2006) Initial co des were derived from analysis of the pilot interview and the first couple of interviews, resulting in a list of six preliminary codes. For each subsequent interview analysis, the researcher marked every repetition of an initial, preliminary code and liste d
65 new codes that emerged from the interviews. At the end of the initial coding phase, more than 70 codes had been identified. The transcripts were then revisited in focused coding and organized into theoretical categories and subcategories. Additionally, c oding yielded theoretical propositions that were first recorded as notes and later as memos (Charmaz, 2006; Jeon, 2004) Grounded theory researchers often use memos to record intermediary findings, aiding t propositions or a model (Charmaz, 2006) This intermediate step also was helpful in pointing to the need for further exploration of data and in identifying weak cate gories or gaps in the information collected. The memos were sorted, compared, and analyzed until theoretical saturation was reached. Before a final draft of theoretical propositions or a model could be prepared, the role of previous literature on the subje ct and where it fits into the study had to be considered. This consideration refers to theoretical sensitivity the ability to give meaning to data as discovered through research and is a key aspect of the grounded theory method (Charmaz, 2006; Glaser & Strauss, 1967) The following subsection addresses theoretical sensitivity in more detail. Literature review and theoretical sensitivity review should be put off until after the completion of data analysis. Their argument, which Glaser (1978) refers to as theoretical sensitivity, was that researchers should not carry preconceived ideas into the analysis that might taint or hinder their abi lity to identify an emerging theory (Charmaz, 2006) researchers approach their work with considerable background and prior knowledge of their discipline, Charmaz (2006) pointed to the ambiguity and shifting views of Glaser and Strauss in their continuing work. Similarly, Glaser (1978) suggested that
66 researchers need to be familiar with many theoretical codes, which facilitate their sensitivity to observe subtle re lationships in the data. The topic of theoretical sensitivity has seen much debate in recent years, with consensus growing that an initial review of literature should be done to help focus the study. Still, researchers should view literature critically to avoid drowning out an emerging theory (Charmaz, 2006; Goulding, 1998) In fact, Goulding (1998) argued that approach the res earch situation with a theoretical perspective developed from their researchers first complete a thorough and focused literature review to set the stage for the research and then revisit the literature, expanding their review once analysis is complete. She suggested: Analyze the most significant works in relation to what you addressed in your now developed grounded theory. Assess and critique the literature from this vantage poin t. Your literature review can do more work for you than merely list, summarize and synthesize major works. (p. 166, emphasis in the original) The literature review for this study was conducted in two phases, as suggested by Charmaz (2006). Initially, the c entral ideas and theories in the construction of meaning of health, illness, and disease were incorporated to focus and delimit the study, as well as identify to which areas this dissertation could contribute new knowledge. The literature was then revisite d following data analysis, and as found appropriate, new literature was reviewed to examine and help explain the findings and conclusions of the the question of fib romyalgia and its influence on those with the condition.
67 Trustworthiness of the findings Validation in qualitative research encompasses many perspectives related to the importance of validation, definitions of and terms to describe it, and process for esta blishing a valid study (Creswell, 2007) Lincoln and Guba (1985) (p. 300) Angen (2000) argues that the validation of interpretive research is defined as an evaluation of its trustworthiness. Furthermore, qualitative research should have a stimulat ing new dialogue (Angen, 2000, p. 389) In this study, several measures were taken to ensure trustworthiness and validation of findings, including corroboration of themes through triangulation of data that included a co mbination of qualitative content (framing) analysis and in depth interviews. Additionally, in later interviews, member checks were done with some of the interview participants to solicit their views of the credibility of the findings and interpretations. L incoln and Guba (1985) consider member Similarly, the researcher conducted follow up interviews with two of the participants to discus s and refine, if necessary, the proposed theory. The findings detailed in Chapter 4 reflect their insights and recommendations. Subjectivity of research and statement of subjectivity Qualitative researchers face several ethical issues, including informed c onsent procedures and confidentiality of and benefits and risks to participants. To gain support for a study, researchers generally convey to participants that they are taking part in a
68 study, explain the purpose of the study, and are honest about the natu re of the study (Creswell, 2007) Studies on sensitive topics this dissertation on fibromyalgia in women, for example require special handling, particularly in terms of researcher he researcher shares personal experiences (Creswell, 2007, p. 142) Bracketing refers to putting aside personal biases and pre conceived ideas about a research topic and entering the life world of the research participants as fully as possible (Moustakas, 1994) Thus, bracketing allows researchers to move away from the ev eryday and see the data anew (Moustakas, 1994) In this dissertation, the researcher acknowledges her status as an outsider insofar as she does not have fibromyalgia. The researcher was born to a poor, white family and raised i n a small, rural Midwest town in the United States. Her family was without health insurance. In 1970 shortly after her 10 th birthday the researcher was diagnosed with scoliosis, or curvature of the spine. At the time, scoliosis was relatively new in di agnostic terms and treatments were exploratory and expensive. The researcher was prescribed to wear a bulky, painfully heavy, and unsightly contraption known as the Milwaukee brace, which likely is one of the earliest brace treatments for scoliosis. From f ifth grade through her sophomore year of high school, the researcher wore the brace for 23 hours a day, seven days a week. The five years the researcher spent in the brace were particularly difficult in terms of relationships with her classmates, with some being especially unkind by frequently ridiculing her and calling her names. Even those who were more sympathetic did not quite understand the problem was spinal related, most
69 likely because the design of the brace entailed neck and throat rings to force s pinal alignment. Ultimately, the brace treatment was not successful, and at the age of 15, the researcher underwent two spinal fusions to correct the curvature. The fusions to this day cause the researcher pain and some mobility problems. The researcher be lieves this experience may help her develop empathy with the female fibromyalgia patients in this study. The researcher is the first member of her family to possess a college degree and earn above a living wage. Thus, her personal beliefs about seeking hea lth care may not health care professionals to be helpful and honest, and believes that someone who is educated in a particular health area is better at helping with a pr oblem in that area than someone who is not. However, as an educated woman who has experienced doubt and skepticism with regard to a health issue, the researcher expects health professionals to respect and trust her as a patient. Following this subjectivit y statement and explanation of the method and how it is employed in this research, the next chapter details the findings of the study. Then, the discussion and conclusions are presented, including an analysis of the contributions and limitations of this st udy and potential avenues for further research.
70 CHAPTER 4 FINDINGS The ma in purpose of this study was to begin to refocus the discussion on fibromyalgia within the context of the women who live with the condition, and thereby, increase awareness of thei r experiences and improve practice and heighten sensitivity among the lay and medical communities. To do so, the researcher used a constructivist grounded theory approach detailed by Charmaz (2006) and sought to build theoretical knowledge that would contribute to a better understanding of what it means for a woman to have a diagnosis of fibromyalgia This chapter contains the findings constructed from the media texts and interview data collected, which r elate to the central question s of meaning making and how women conceptualize messages about their experiences with fibromyalgia Additionally, theoretical categories that inform a theoretical model derived from these findings are presented. Likewise, the theoretic al framework for the proposed theory of the meanings of fibromyalgia is detailed in Chapter 5. As a starting point to understand ing the researcher first undertook a qualitative framing analysis to determine how fibrom yalgia has been depicted in the media (periodicals) over the past 30 years This analysis was followed by in depth interviews with women fibromyalgia patients from across the United States to learn more about the meanings the women attach to their individu al diagnosis of fibromyalgia. The chapter concludes with an analytic scheme (conceptual framework)
71 Qualitative Framing Analysis The first research question in this study ask ed: How is fibromyalgia framed in periodicals dating from January 1, 1980, to December 31, 2011? To answer this question, a total of 34 articles published between October 1985 and December 2011 in 20 magazines were examined. 1 The highest number of articles (n=10) appeared in Prevention Two magazines Ladies Home Journal and Psychology Today had three articles each, and Delicious Living had two articles. The remaining 16 magazines each contained one article. The magazines were: Good Housekeeping, America n Health, Yorker, Time, Flying, Better Homes & Gardens, Newsweek, Science News, O, The Oprah Magazine, US News & World Report, and (Table 4 1). Most of the article s (n=21, 62%) were dated in the 2000s, with the highest number of stories appearing in 2001 and 2003 (n=4 each). Three stories each were published in 2000 and 2002, and two stories in 2006. The remaining stories appearing in the 2000s ran in 2004, 2005, 20 07, 2010, and 2011 (n=1 each). No stories were found in 2008 or 2009. N ine articles (26%) were published in the 1990s, with the majority (n=6, 67%) running from 1996 to 1999. The highest number of stories (n=3) ran in 1999. Two stories were published in 19 90, and one story each appeared in 1993, 1996, 1997, and 1998. No stories were found in 1991, 1992, 1994, and 1995. Four stories were published in the 1980s (12%) with the first appearing in 1985. The remaining three stories each appeared in 1987, 1988, a nd 1989. No stories were found before 1985 or in 1986 (Table 4 2). 1 The systematic search for articles began with January 1, 1980. The first article found through the search was dated October 1985.
72 For the most part, the articles were short, running from a half page to one page in length. The average length of the articles was 1,226 words, with the shortest article containing 208 word s and the longest, 4,768. Nearly half of the articles (n=14, 41%) had 500 words or less, with 21 articles (62%) having 1,000 words or less. The majority of the articles with bylines were authored by staff writers or free lance writers (n=24, 77%). Six arti cles (19%) were written by medical professionals with experience treating fibromyalgia patients, and one article (3%) was a first person account by a woman with fibromyalgia. The remaining three articles included no byline or author information (Table 4 3) The top sources quoted in the articles tended to be medical and academic researchers and professional organizations. Foundations dedicated to helping people with fibromyalgia and directors of medical centers devoted to the treatment of fibromyalgia were referenced in 17 of the articles (57%) researchers and studies in 14 (47%), and fibromyalgia experts in 12 (40%). Rheumatologists were cited in 6 articles (20%), followed by medical doctors in 5 (17%), and neurologists and internists in 3 each (10%). Fibr omyalgia patients were quoted in 7 of the articles (23%), fitness specialists in 3 (10%), and dietitians in 2 (7%). Among the remaining sources attributed in the articles were fibromyalgia advocates and authors (n=2 each 7%) and lawyers, counselors, and family members (n=1 each, 3%). No sources were cited in 4 of the total 34 articles examined (Table 4 3). An analysis of headlines (n=34) subheads (n=22) and body text s of fibromyalgia articles in periodicals (n=34) revealed five media frames : (1) lifesty le, (2) legitimation,
73 (3) mystery, (4) industry, and (5) stigma The frames are discussed in more detail in the following subsections. Lifestyle Frame T he overall predominant frame was lifestyle which reflects individual personality traits, attitudes, val ues, and behaviors of fibromyalgia patients as they relate to physical and mental health Self care regimens including diet and exercise, and support systems also figure prominently in the lifestyle frame The lifestyle frame was represented in 18% of hea dlines (n=6/34) (Table 4 4) and 36% of subheads (n=8/22) as illustrated in phrases such as (Van Tine, 2000) (Yeager, 2001) body (Searles, 2011) (Peeke, 2003) in subheads. Five of the 6 headlines (83%) and all 8 of the subhea ds (100%) presenting the lifestyle frame were published in the 2000s. The other headline in this frame appeared on an article that ran in 1999. While the lifestyle frame was the most prevalent of all headlines and subheads appearing in the 2000s, the frame dominated overall with the body texts of 71% (n=24) of the articles published throughout the 30 year time span of this analysis primarily focusing on lifestyle (Table 4 4) Fifty eight percent (n=14) of the texts prominently displaying the lifestyle frame ran in the 2000s, with 25% (n=6) in the 1990s, and 17% (n=4) in the 1980s. Characteristics of fibromyalgia patients figured prominently in the lifestyle frame, particularly in articles from the 1980s. For example, a 1985 article in Prevention described pe ople with fibrositis the name for fibromyalgia at that time as having
74 (Davi dson) Furthermore, the article driving, aggressive, and (Davidson, 1985) Though clinical depictions of fibromyalgia patients as perfectionists waned somewhat in the 1990s, the portrayal again became more visible in articles in the 2000s. One example comes from a professor of psychiatry who noted that observations showed fibromyalgia patients to be highly driven overachievers unaccustomed to (Schorr, 2005) Another aspect of the lifestyle frame pertains to patient attitudes about their illness, with fibromyalgia sufferers and experts (Kossoff, 1999) The idea that patients hold the key s to success of treating fibromyalgia is further demo nstrated in a statement by one early fibromyalgia expert, who said, w (Davidson, 1985) Also, as one female fibromyalgia patient noted helped teach her critical things about self (Gormley, 2002) egular e xercise, chemical given for coping with fibromyalgia (Sheppard, 1999) However, behavior change alone is insufficient Patient awareness also is needed. For exampl e, an article in Business quoted one physician who had worked with fibromyalgia patients for 30 years as saying good health
75 place, then making a conscious effo (Pear, 1990) Another aspect of treatment and behavior involves psychological therapies An article in Psychology Today suggested fibromyalgia patients often refuse to accept the valu e of psychological therapies because they psychiatric, it makes them less legitimate (Schorr, 2005) The final factor in the lifestyle frame relates to s upport systems. This aspect may be especially important in terms of the mental health of fibromyalgia sufferers, who (Sheppard, 1999) The perception among non sufferers seems to be that of fib romyalgia as unreal or non serious because the condition is invisible. One fibromyalgia support group leader suggested such negative stating, can have a tough time believing the (Sheppard, 1999) Legitimation Frame The No. 2 frame overall was legitimation, which comprises various theories and postulates based on scientific research related to the cause, diagnosis, and treatment of fibromyalgia. This search for reasonable and logical answers to the numerous questions (Perlmutter & Goldstein, 1997) (Ser Vaas, 2000) (Harrar, 2003) (Seppa, 2006) (Hobson, 2007) found in 29% of headlines (n=10/34) (Table 4 4) and 23% of subheads (n=5/22) Nine of the 10 headlines (90%) displaying the legitimation frame were published in the 1990s and 2000s (n=4 and 5, respectively). Scientific studies also figured prominently in the body texts of articles exhibiting the legit i mation frame, which
76 was mentioned in 91% (n=31) of the articles examined. The legitimation frame was most dominant in the 1990s and 2000s, with 65% (n=22 ) of the articles primarily focused on this frame (Table 4 4) Researchers over the years have posited several theoretical explanations for the cause of fibromyalgia from stress to a genetic predisposition. Early suggestions of (Gadsby, 1987) Another early account centered on organic or biochemical changes in the body brought on by trauma. catch the flu or have an accident, this could disturb the (Pear, 1990) The chemical and hormonal line of inquiry continued through the late 1990s and into the early 2 000s with a focus on two brain chemicals substance P and serotonin believed responsible for the heightened pain sensations felt by fibromyalgia sufferers (Kossoff, 1999; Reid Holman, 1999) This early research on the central nervous system served to legitimize (Harrar, 2003) The legitimation frame also was apparent in the growing number of research studies that have contributed to a greater understanding of fibromyalgia and improved treatments. For example, one article referenced early studies focusing on (Gadsby, 1987) Other articles presented examples of
77 (Seppa, 2006) but also led to the introduction of fibromyalgia specific drugs like Lyrica (Hobson, 2007) Despite the substantiation of fibromyalgia presented in the legitimation frame, credibility still seems to be a chal lenge. This is apparent in more recent citations in this analysis that s tors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, (Schorr, 2005) Thus, the latest thinking on fibromyalgia points to a mind (Schorr, 2005) Mystery Frame The mystery frame encompasses descriptions of fibromyalgia as a condition with puzzling and perplexing symptoms that confound the medical establishment. The complexities of diagnosing fibromyalgia were t (Gadsby, 1987) Part of the difficulty involved with diagnosing fibromya lgia stems from its association with Barr virus (now known as chronic (Pear, 1990) The ambiguity surrounding a fibromyalgia diagnosis prevailed in headlines, with references to a ions appearing in 32% of headlines and subheads (n=11 /34 and 7 /22 respectively) (Table 4 4) Although headlines exhibiting the mystery frame were visible in all three decades of the analysis,
78 the majority (64%) presented in the 1980s and 1990s (n=3 and 4, respectively) with 4 (36%) in the 2000s. The most recent article with the mystery frame in a headline was published in 2002. While the questioning tone of the mystery frame in the headlines carried into the body of the articles the frame tended to domin ate texts in the 1980s, with 75 % (n= 3 ) of the 4 articles published in this time frame primarily exhibiting the mystery frame. Overall, the mystery frame tied with industry as the third most dominant of the five frames, with 38 % (n=13) of the 34 articles ha ving a major focus on the enigmatic nature of fibromyalgia (Table 4 4) a century doctors have described and pondered its puzzling symptoms. The condition has been called everything from rheumatic gout an arthritislike condition to fibrositis (Jaret, 1990) Indu stry Frame The industry frame covers any enterprise associated with the culture of fibromyalgia from profit making ventures relat ing to drug and non drug treatments to management issues involving medical care, government regulations, and insurance and lega l questions, and support organizations. Overall, industry tied with stigma as the third dominant frame, with 38% (n=13) of the articles examined primarily cente ring on this frame (Table 4 4) (Peeke, 2003) fit (Harrar, 2004) that point to treatments designed to give fibromyalgia sufferers a break from their pain, the industry frame was dominant in 9% of headlines
79 (n=3/34) and 4.5% of subhead s ( n=1/22 ) (Table 4 4) The first headline to exhibit the industry frame was published in 2001, followed by headlines in 2003 and 2004 (n=1 each). The only subhead to present the industry frame ran in 2001. Although interest in fibromyalgia has grown in the last 30 years, industry concerns have paid particular attention to the ailment in the last 10 years or so This is especially apparent in the industry frame which rose to prominence in the 2000s when 13 of the 23 articles (5 7%) presenting in this frame were published. One article especially reflective of the industry frame ran in The New Yorker The article cited several industries with heightened interest in fibromyalgia, including the media doctors, lawyers, and drug compa nies. The article notes that fibromyalgia has (Groopman, 2000) Furthermore, the articl lawyers involved in disability litigation, and drug companies marketing treatments of omyalgia (Groopman, 2000) The industry frame also is visible in articles referencing (Underwood, 2003) One resu lt of the race is cited in a U.S. News & World Report article announcing FDA approval of One fibromyalgia patient quoted in the article took special note of t atur (Hobson, 2007)
80 The financial toll of fibromyalgia also was addressed in the industry frame in stateme (Kossoff, 1999) Stigma Frame The stigma frame entails references to medical and lay beliefs and ideologies toward fibromyalgia to include demeaning and dismissive labels that signal fibromyalgia as a trend diagnosis or illness. Although the controversy over fibromyalgia has been much referenced in the media, stigma presented as the fourth dominant frame overall in bot h headlines and body texts of the articles examined. Stigma was featured prominently in 12% of headlines ( n=4/34 ) and 4.5% of subhead s ( n=1/22 ) (Table 4 4) While the stigma frame was introduced in a subhead in 1989, the next appearance of the frame in a h eadline did not occur until 2001. The remaining references to the stigma frame in headlines followed in 2002, 2003, and 2005 (n=1 each). The body texts of 23 of the 34 articles examined (68%) suggested the stigma frame. However, the frame was featured prom inently in just 2 of the articles (6%) (Table 4 4) Most references to the stigma frame occurred in the 2000s (n=13, 57%), followed by the 1990s (n=7, 30%), and the 1980s (n=3, 13%). u nderstanding, making the condition a source for debate in the medical community, (Kossoff, 1999) Such skepticism often has resulted in dismi ssive patient labels such as (Groopman, 2000) Other
81 (Kossoff, 1999) (Jaret, 1990) you (Rouse, 2003) present fibromyalgia as little more than a fad. Some physicians further suggest the fibromyalgia label may be doing patients more harm than good by inflating the problem. One rheumatologist who said his (Sheppard, 1999) ey have a (Jaret, 1990) Finally, the negative effect of fibromyalgia on relationships is also noteworthy as demonstrated in the (Rosen, 2002) In Depth Interviews The second research question in this study asked: What meaning do women with a diagnosis of fibromyalgia ascribe to their experiences? To answer this question, the researcher first undertook a pilot int erview with a 50 something year old woman diagnosed with fibromyalgia who was identified using the Nat ional Fibromyalgia Association W eb site directory before conducting semi structured, in depth interviews with women fibromyalgia patients between the ages of 2 3 and 63 Initial contact with the women interviewed was made through email messages (Appendix E) to 50 randomly selected fibromyalgia support group leaders from across the United States These initial contacts yielded 10 (20%) responses from support group leaders with 2 9 support group members replying with interest in taking part in the study Interviews were conducted with e ligible participants in the order responses were received. Data analysis was done on each interview until the point of saturati on, or when the data yielded no new
82 information. For this study, saturation was reached at 8 interviews with support group members. An additional 4 interviews were conducted to confirm and expand on the findings. Therefore, this study includes insights fro m a total of 12 participants from 7 states. G eographic distance made in person interviews impossible in nearly all cases. Thus, 11 interviews were conducted by telephone and 1 in person. The average length of the interviews was 60 minutes Initial codes we re derived from an analysis of the pilot interview resulting in a list of 6 preliminary codes For each subsequent interview analysis, the researcher marked every repetition of the pre identified code and listed new codes that emerged from the interviews. At the end of the initial coding phase, more than 7 0 codes had been identified. The transcripts were then revisited in focused coding and organized into a final total of 10 theoretic al categories and subcategories. Pilot Interview The pilot interview for office at the end of her midweek workday and lasted just about 60 minutes In the subsections that follow, s hort descriptions of the interviewee and interview setting and interview guide and protoc ol are provided followed by a brief description of the findings from the pilot interview From here on, the pilot interviewee will be referred to as Arizona. Interview guide and protocol The interview guide and informed consent form are included in append ices C and D T he researcher first read the informed consent form aloud to Arizona emphasizing the voluntary and confidential aspects of the study throughout the review. Arizona then was given a chance to have questions answered before she was asked for h er verbal
83 consent to take part in the study. To ensure strict privacy, v erbal acknowledgment to be interviewed was the only consent requested for participation in this study. Pilot interview findings Several overarching themes surfaced after multiple readi ngs of the pilot interview transcript. Highlights of the four main themes identified follow. Advocacy The theme of advocacy pertains to knowledge both personal and public about fibromyalgia and raising awareness of the condition to others. Arizona had no clue what fibromyalgia was before her diagnosis, stat ing she had nope, fibromyalgia by her doctor. However, the pamphlet made a real impact on Arizona who like appeared to be a factor in self awareness. She talked at length at various points and her educational background in science and health communication at two bear Arizona further demonstra ted perceived higher self awareness through her multiple references to research studies and use of clinical terms horn taught a self hel p course on fibromyalgia and received a certificate for volunteer of the manage symptoms Raising awareness of others about fibromyalgia is evidently important to Arizona w
84 it Arizona is pretty open about her fibromyalgia and has told her story in TV interviews, stating: the perceived negative reactions the negative p erceptions. (lines 342 342 ) Invisibility. The invisibility theme is closely related to advocacy but focuses more with fibromyalgia. Arizona talked a great deal of being misunderstood by family members, many of whom did not believe she was ill bec family members who had a hard time accepting her diagnosis was her ex husband: mind, if you have a perfectly fine, perfectly normal, perfectly healthy (lines 221 224) Arizona with them to the band booster meeting or to whatever it was extended family, Arizona said her mother in the house The perception of having an invisible illness further was revealed in statements the outside Arizona doctors have with a fibromyalgia diagnosis. Again, she talked about meeting disbelief:
85 go get a life However, not all perceptions by people Arizona encountered were negative Arizona Toll. This third theme toll primarily is represented by the influence fibrom yalgia has had on Arizona and the results of that influence on her personal life, specifically her activities, relationships, and overall health. Pain is a constant for Arizona Arizona do fibromyalgia pain has had on life concerned her relationship with her former ppeared, you know, um, because it made me uncomfortable Arizona said a coffee date and I would have to bail even get in the car and drive At the time of her diagnosis, Arizona was a doctoral student in interpersonal and a half into the program because her volunteer work with the Arthritis Foundation, for one Arizona
8 6 further talk ed about the effect fibromyalgia has had on her travel, both in terms of wherever One time before she started buying the insurance Arizona daily routine cente rs on life with fibromyalgia, which keeps her tied to her house in the mornings longer than most other people. Because of some other health conditions that frequently co occur with fibromyalgia, Arizona said she needs an extra Trips to the grocery store also are problematic for Arizona s of people Arizona Arizona said. Sel f care. The self care theme relates to how Arizona contends with her fibromyalgia symptoms and treatment, as well as her life in general and the people she encounters every day. Fibromyalgia is a big part of life, which, as stated earlier, involv es daily, Arizona Arizona in coping with fibromyalgia seems to be her relationship with her physician and he r own
87 education and experience. As is the case for most people who suffer with fibromyalgia, Arizona c urrent care consumer because she knows that I have the know, bring up eb site or whatever Her emphas is on research and education as a way of coping with her fibromyalgia symptoms is further ooking at who is posting those W would the average health In terms of treatment, Arizona needed to find something else he also said she has learned over the years to doses of anti depressants, but she said those have not worked well for her. Mainly, Arizona stressed anything that calms down the nervous system is going to take away some of the pain for Arizona Finally, derisive humor appears to be a way for Arizona to cope with unsympathetic and unaware outsiders. She recalled a couple of situations where she h ad conversations in her head in which she
88 would respond to someone who insinuated she was undeserving of a handicapped parking spot. F or example: I have a comeback that I never used it, but, you know, it goes through my head. Like if somebody says to me look stupid either goes through my head, believe me ( lines 2 89 293 ) In summary, awareness and self care seem to be the most important factors for Arizona in coping with the frustrating symptoms of fibromyalgia. Furthermore, Arizona is keenly sensitive to the debate taking place among physicians and researchers alike with atus as a medical condition. Perhaps because of her own heightened awareness, Arizona presents herself as an advocate for fibromyalgia sufferers and uses every opportunity she can to increase awareness among others whether in a grocery store or in a park ing lot. Though not discussed in this pilot interview analysis, two other themes were found involvement in a major highway vehicle accident that pre dated her fibromyalgia d iagnosis. Additionally, the concept of time was embedded in the other themes and long In D epth Interviews This section further examines the central question related to with fibromyalgia. After the introduction of study participants, the key themes identified in interview transcripts are examined to gain a better understanding of what a diagnosis of fibromyalgia means to the women who live with the condition.
89 S tudy participants The main i nterviews for this study were conducted over a four week period beginning June 5, 2012, and ending July 5, 2012. As stated in the discussion of methodology, the focus of the study was 20 to 70 year old women who have a diagnosis of fibromyalgia and live in the United States. In all, 12 women from 7 states took part in the interviews. The youngest participant was 23 years old, and the oldest, 63 The 12 women interviewed range from high s chool graduates to those who have s degrees. O ne woman had completed all of her coursework for a Ph.D. before she had to leave school for health reasons Five of the 12 women were working either full or part time jobs at the time of the inte rviews; 4 were unemployed, and 3 were receiving disability benefits. The marital status of the women interviewed was evenly split with 6 of the women married and 6 single One of the women had been divorced two times. Five of the 12 women had children. Th e time span between the years, meaning the women had been living with a diagnosis of fibromyalgia an average of 8 years Although o ne of the women interviewed had yet to recei ve an official diagnosis she was seeing a rheumatologist and undergoing treatment for fibromyalgia. Pseudonyms for the interviewees were assigned by the researcher to facilitate discussion of findings. M eet each of the women respondents now. Interviewee 1. Meredith, 29, was diagnosed with fibromyalgia in October 2010. She had been seeing doctors and undergoing various medical testing for close to a year before receiving an official diagnosis. Meredith, who says she has been on her own since she was 15 lives in Massachusetts and is a high school graduate with one year
90 of college. Before she left college to take a job, she was studying busine ss management and communication Meredith no longer work s She received unemployment for a short time until she rea lized she would not be able to return to her job At the time of the interview, Meredith was w ithout an income and in the process of applying for disability. Although she rec eives state medical insurance, she says her coverage is basic and does not provide her with all the care she needs erapy to ensure my well Still, Meredith that employs a number of health care practitioners from gastroenterologist s and immunologist s to rheumatologist s and primary care physician s Most of main fibromyalgia symptoms are addressed by her rheumatologist and primary care physician. Meredith is single and lives with her female partner, who she has been with for four years. Interviewee 2. mid 1980s when she began treatment for rheumatoid arthritis. Fibromyalgia did not come up as a possible diagnos is until 10 years later in the mid 1990s when the female partne r of her rheumatologist who was out of the office during one of regular visits said: However, Adele did not receive an official diagnosis of fibr and when her family physician finally told her that she did have fibromyalgia. Thus, it took from between the first mention of the possibility of fibromyalgia and an official diagnosis.
91 really called it, and especially when I went to rheumatologist s they were just seeing me Adele who s degree in occupational therapy has worked most of her l ife as an occupational therapy assistant She worked full time until the mid 1990s when she went part time because with her symptoms. She kept working through the 1990s and into the first d ecade of the 2000s before applying for disability in July 2011. Her disability application was accepted later that year At the time of the interview, Adele was receiving group health coverage from her previous employer under th e Consolidated Omnibus Budget Reconciliation Act (COBRA). When asked if her s were not. think insurance companies need to become more responsive to the healing arts Sometime i n May 2012, Adele left the state of Washington for Idaho, where she currently lives with her husband of 42 years. Before moving to Idaho, Adele had been seeing a primary care physician for her fibromyalgia treatment. At the time of the interview, s he was in the process of finding a physician in Idaho who would treat her. grown son. Interviewee 3. Lexie, 29, going on 30 at the time of the interview first heard the a TMJ (temporomandibular joint) doctor for severe pain in the jaw, neck, head, and back.
92 (of) That person was a out other diagnoses. She was officially diagnosed with fibromyalgia in April 2006. A However, in retrospect Lexie said she s middle school and high school, adding that married. Le wor ked in desktop publishing as a W eb and graphic designer until her fibromyalgia symptoms made it impossible for her to continue and she quit her job. H er main financial support now com However s he does receive a small income from Social Security employer provided insurance plan, Lexie says the insurer will not pay for fibromyalgia related alternative treatments s uch as acupuncture Also, except in the case of diabetes the insurer does not cover services of a nutritionist. This is especially because it hurts to exercise Lexie currently manages her fibromyalgia with the help of a pain specialist, who is her main health care provider. At the time of the interview, she said she had just graduated from my GI doctor to where s
93 Lexie lives in Florida with her husband. When asked about her future outlook and children, Lexie began to cry stating : two months. In a way, tha Interviewee 4. Izzie 57, is among the more recent study participants to be diagnosed with fibromyalgia. She said ago and it took 2 years to get a diagnosis. Unlike other study participants, pain is not a primary concern for Izzie who also has been diagnosed with chronic fatigue syndrome. Her chief complaint s c enter on concentrat ion. Izzie had been seeing a rheumatologist for her fibromyalgia but switched to a general practitioner becaus e she said everything the rheumatologist gave her (her) life by Dr. Jordan Rubin (Our Company: Meet the GOL Team, Jordan Rubin) As such, which she says keep s her from sleeping The one prescription medication she does take is t ramadol, which she says help s function and manage the pain she has on occasion Izzie is a high school graduate with college She worked for nine years as a corporate trainer into positions in the non profit sector. At the time of the interview, Izzie who lives alone and has no children had tendered her resignation from her full time job as a store
94 supervisor for a national non profit agency and was preparing to move from he r home in Florida to North Carolina, where she has family. Izzie said making a change at her age loves. nters (for my house), Izzie will lose her employer paid health insurance when she leaves her job. Although she will be eligible for benefits under COBRA, Izzie said she planned inste ad Interviewee 5. Miranda, 48, was diagnosed with fibromyalgia in the summer of 2009. However, she passed off her chief complaints of heada ches and extreme fatigue go for close to a year before she decided to check things out. A former drug representative for a pharmaceutical company, Miranda was proactive about learning more about her sym ptoms before scheduling a visit with a physician. Her research in part consisted of a n online symptom check WebMD health W eb site, which pointed her fibromyalgia and scheduled an appointment shortly thereafter with a rheumatologist who continues to be her primary caregiver for her fibromyalgia reducing measure, she left h er pharmaceutical company job of 20 years after she was diagnosed with fibromyalgia. She currently works as a community liaison officer for hospice. Miranda is
95 s employer insurance plan, which appears to take care of most of her f ibromyalgia related treatment, including drugs and p hysical therapy. Miranda and her husband live in Missouri with their twins a boy and a girl, aged 13. Interviewee 6. Although s he works as a registered nurse, Christina, 50, had not heard of fibromyalgi a before her diagnosis 12 years ago in 2000. Much like Miranda, Christina said she attributed her fatigue and accompanying pain Christina said she struggled working full time as a home health nurse for about five years before she going with patients to injury rel year period, Christina took an opportunity on one patient visit to talk with a physiatrist because, as the The rheumatologist confirmed the fibromyalgia diagnosis through a n examination of tender points and medical test s to rule out other possibilities. Christina primarily manages he r symptoms with pain medication and a number of She neither of which is covered under her insurance plan. In fact, Christina ry very little seems to help. Still, she continues to work, but on a reduced three day a week schedule.
96 Christina in Missouri. They have two grown daughters and several grandchildre n Interviewee 7. Cassie, 53, is the only study participant who se physicians have not However, based on her own research, Cassie is convinced she She began experiencing fibromyalgia like symptoms in 2008 but put off seeing a doctor Indeed, at that time she w as caring for her husband, who had cancer and her mother, who had amyotrophic lateral sclerosis (ALS), also known as Lou Both her husband and her mother have since died. Cassie said. Cassie says she has brought up the subject with him. she said Cassie, who works full time, has mixed On the other to become unable to work and need assistance or disability. For now, Cassie, a high school graduate, continues to work in residential home sales in her home state of Massachusetts. As an indep endent real estate agent, Cassie is self insured. She has not remarried and has no children.
97 Interviewee 8. Addison, 49, before her son, now 21, was born. (the pains) s o I just chalked them up to being one of those things that just happened in life Addison said. In 1995, Add doctor told her that she had fibromyalgia. Her doctor said at the time that not much was known about fibromyalgia and little research had been done on causes or treatments. However, gave to She has since been prescribed a number of medications but has found very few outside of narcotic painkillers that help. One thing she has found to be helpful is her swimmi ng Addison had worked as a production manager for a publishing company before she was laid off in 2004. She then earned her real estate license and went into business wi th her partner. Although Addison is no longer able to show property, she do es help eb site and also does some accounting and bookkeeping and marketing and advertising. At the time of the interview, Addison said she had recently appl Addison is single and lives with her female partner, who she has been with for 25 years. She has one child, a 21 year old son. Interviewee 9. April, 44, was diagnosed with fibromyal gia in January 2004. Her path to diagnosis was shorter than most beginning in the fall of 2003 that were After ruling out heart
98 There was no question. Fibromyalgia was not new or unfamiliar to April, who had worked for a rheumato logist before receiving her own diagnosis. Initially, April was prescribed Lyrica, She said the medication affected her concentration and eyesight ad she said. April now takes Cymbalta, which she said April has technical and trade school training in the medical field and has worked as a certified pharmacy technicia n and a registered medical assistant. Unemployed at the from SSDI. April, who has been married and divorced two times, lives alone in Michigan with her two cats. However she did say she was in a relationship with a man who lived April has one child, a 20 year old son. Interviewee 10. Teddy, 49, about to turn 50 at the time of the interview, was diagnosed with fibromyalgia in fall 2005 after she was Her earlier during a time when the diagnosis was much l ess accepted than today. In fact Teddy said she also Unlike some of the other women interviewed for this study, Teddy said the onset of her symptoms was sudden She was a doctoral student when within a few weeks of the
99 start of the fall term of her second year Teddy said she was hit with what she thought Teddy said her official diagnosis also was quick, aided, in part, by her family history that led doctors to suspect that she, too, had fibromyalgia. not only from her own experience but also perhaps more so from her participation in a clinical drug trial for treatment and an ongoing stud y of fibromyalgia. I definite ly have it. No d American history, said she had to let go of her Ph.D. studies because of her fibromyalgia Though unemployed at the time of her interview, Teddy said she was an assistant instructor at a training facility for puppy kindergarten. She said she Teddy is married and lives in Maryland. She has no children of h er own but she does have several grown stepchildren Interviewee 11. Catherine, 23, is the youngest participant in this study. diagnosis of fibromyalgia came in fall 2008 when she was a student at a private non sectarian university in a large, metropolitan city. decided to seek help
100 center on campus, where she un derwent a number of medical tests and even was referred to a psychiatrist. But, she said s he found no answers and nothing she was given or had done to her helped Then, one day, a physician at the center Catherine had not seen previously told her that her problems might be muscle related. The physician referred Catherine to a rheumatologist, who officially diagnosed her with fibromyalgia. Catherine said several of her family members are doctors. They wanted her to get a second opinion, so she saw another rh eumatologist and an endocrinologist, who both ordered additional tests and reviewed her medical records before confirming the first diagnosis of fibromyalgia. Catherine was prescribed Cymbalta, which she took for about four months before stopping because o f side effects that included depression. She now copes with her symptoms Catherine also said she schedules several sessions with a bio a year Currently unemploye d and without health insurance, Catherine said she could afford to do no more. In 2010, Catherine was in her third year of college, majoring in political science, when she took a medical leave of absence. She says she has since withdrawn from school for he alth and financial reasons. Catherine is single and lives with her mother in Washington state. Interviewee 12. Ellis, 41 was diagnosed with fibromyalgia in 1994 about six years after she learned that her mother also had the condition. s off at diagnosed with fibromyalgia in the late 1980s, a time dominated by widespread belief
101 that the condition was mostly psychological. After Ellis received her own diagn osis, she float nurse in a hospital for about 12 ye ars before her fibromyalgia symptoms forced her to quit in 2006. She currently is on disability and is receiving Medicare insurance benefits th at help pay for her treatments. Although Ellis was quite shy in the interview and sparing with her words, she did Ellis is married, lives in Missouri, and has no children. Main interview findings This section contains the results of an analysis of transcripts of interviews with 12 women fibromyalgia patients. All interviews were tape recorded and transcribed. The researcher transcribed the first interview, with a transcription service hired to transcribe the re maining 11 interviews. Each transcription was verified against the tapes by the researcher. While none of the words in the original transcripts were altered, some of the more conversational words were eliminated to enhance clarity and readability of the an alysis For example, words may sound natural in spoken language, but they often result in awkward reading. A sample interview transcript is included in Appendix G. After the transcriptions were received and reviewed, the researcher w rote summaries of each interview For the purpose of member checking, the researcher then sent the summations via a personal email message to the women explaining that the
102 purpose for the summation was to ensure the researcher ha d accurately represented changes in the summation that they felt were necessary or to clarify any opinions or reasoning they felt were misrepresented. This step in the process serv ed as a trustworthiness, or validity, check of the analysis and yielded nine responses from the women participants. One woman told of a conversation about this study that she had had with a friend who she said was interested in taking part in future resear ch in this area. In the rest of the responses, the women simply thanked the researcher for taking an interest in them and for helping to bring awareness to a misunderstood medical condition. In total, the transcripts contained 5,871 lines of information t hat was reviewed multiple times with the aim of identifying emerging conceptualizations to formulate theory. An initial line by line reading of each transcript yielded more than 70 key words or concepts This initial coding was followed by more focused rea dings of the transcripts in which the most significant codes were sorted, synthesized, and organized to facilitate theoretical integration. The final analysis of the interview transcripts revealed 10 themes and sub themes: (1) loss, (2) uncertainty, (3) co sts (4) self care, (5) image, (6) perseverance, (7) faith, (8) networks, ( 9 ) time and (10) information sources A discussion of these themes follows. Loss. The loss theme, which also rized by overwhelming mental and emotional exhaustion and physical debilitation. The women interviewed in this study additionally reported feelings of worthlessness, hopelessness, and anxiousness, stemming in large part from the
103 numerous questions surroun ding a diagnosis of fibromyalgia In describing symptoms of fibromyalgia, the women often talked of lacking energy, motivation, and initiative, which frequently resulted in missing out on doing things they used to love and enjoy. Furthermore the women said they felt invisible and misunderstood in general and repeatedly were dismissed by their doctors, who would brush them off and push them out the door during office visits. Fatigue generalized pain, and an accompanying mixture of emotions sparked by these and other symptoms of fibromyalgia descriptions of their circumstances experience may best represent the overall effect of fatigue on the women: at I cannot get up and feed myself. I would rather sit here or lay here than to get up and take the effort to make FL2 1 27). 2 her MO2 18). MA1 192). Teddy summed up the emotional aspect of her fibromyalgia in this way: all of that. It can get very depressing. It can get very discouraging to the point where you think, my life months ago or so, I was really feeling like I was seriously disable d and by. ( MD1 246 ) 2 All citations from interview transcripts begin with the postal abbreviation of the home state of the respondent. MA represents Massachusetts; ID, Idaho; FL, Florida; MO, Missouri; MI, Michigan; MD, Maryland; and WA, Was hington. The seven alphanumeric sets represent the respondents and the first line from which text was extracted. Thus, FL3 127 references the third interview from Florida and the 127 th line of the corresponding transcript.
104 Catherine talked abou opening in the sense that I feel WA1 235). sentiments representing the various activities the women have had to give up or no longer are able to do and life changes th ey have faced since being diagnosed with fibromyalgia. For ID1 46). Previ gym six day s a week (MA1 254). Miranda talked about how depression affected her quality of life suggesting : I am used to being on the go, being very active, being very independent ( MO1 329 ) Addison said fibromyalgia ha FL3 330). MO1 257). April just disliked missing o ut on fun stating : time, but I would go out a couple (of) times a month. I would do a lot more. I rollerbladin g and dancing and swimming that I would do and was involved in than I am now. Now I just kind of sit around and watch TV a lot more often and I hate it. I wish I could be that person that was out having fun, but ( MI1 180 )
105 Ellis referred to the emo MO3 to do MO3 131). Planning either for get togethers with friends or for the future also has its problems for the women interviewed. Cassie said she plans less now, el aborating: I was sort of the one who probably took the initiative to say, Hey, wa nt to make those kinds of plans like I used to. ( MA2 419 ) d my health, my family, my relationships, my : My whole plan has changed. I planned on graduating from (university), going to law school, becoming a senator eventually. Honestly. There would be steps between. Now that just se ems so foreign, so complex. It seems ( WA1 28 ) Finally, the loss theme is exemplified in the sometimes emotion laden, office visits with doctors. Christina, who went to the doctor every three months for on those visits ( MO2 192). cont visit. When she talked about said she a dding FL1 431).
106 MA1 428). Meredith perhaps best summed u healthy plan for me I think will work for you. ( MA1 500 ) Uncertainty. A sub category of loss, uncertainty also may be categorized as ncertainty embodies the broad notions of doubt and unpredictability stemming in large measure from the vague, varied, and volatile symptoms associated with fibromyalgia and the lack of a definitive, non disputed medical diagnosis. Within this environment, study participants spoke of vulnerability that necessitated cautious living and th e need to brace for the unexpected s of fibromyalgia symptoms (Crofford, 2010) Indeed, the women in this study talked about the ir coming ycles and spurring questions such as what now? for her a Although waiting, like what sh o FL3 355). Likewise, Meredith said, start living your life a bit more cautiously point of ( MA1 1 28). experience is similarly volatile : I can have periods of month s at out every day and very active, and walking and doing errands and grocery
107 been my experience. ( MD1 1 4 ) e said ( MO2 20 ). come in. Some symptoms kind of 43). s omething going on something different 16). Meredith refers to Some morning s t get out of bed 277). The women also talked about concerns for and questions about their future with fibromyalgia. Here, Cassie who has yet to receive an official diagnosis of fibromyalgia, discussed her doubts about current treatments and her future: mething out there right now that really is going to help me. My only concern in that regard is if this gets worse for me that I picture. ( MA2 387 ) Newlywed Lexie became emotiona l when questioned about her outlook for the future : have plans for their be feeling in three hours. My life has changed so much in the last six years kind of exciting but in other ways, really scary. I would love to have a child, ( FL3 300 )
108 The ambiguity surrounding a fibromyalgia diagnosis itself prompts uncertainty and ques tions, seemingly w ith no answers In fact, among the biggest frustrations for the women interviewed are the lack of a concrete diagnostic or lab test that definitively identifies fibromyalgia and its cause and the persistent debate in the medical community over whether the condition is worthy of a diagnostic label. Christina, in particular, said she MO2 170) Furthermore, e verything is just so vague t here are still a lot of physicians to this day that MO2 180 ). Meredith spoke of going to her doctor for answers but leaving with nothing but ( MA 1 1 11) ( MA1 20). Costs Another sub category of loss, costs also may be referred to toll tary and non monetary costs associated with a fibromyalgia diagnosis. Monetary costs were related to medical care and prescription and non prescription treatments as well as a loss in income Non monetary costs were represented in quality of life issues, especially the toll on the women themselves and their famil ies and social life. For the most part, the women interviewed for this study had limited income s from either disability or working less than full time. While t he women who have had to quit their j obs because of fibromyalgia primarily talked about the life altering nature of the ir decision s, Lexie perhaps put it most succinctly simply 10). Izzie had just tendered her resignation at the time of her
109 interview She said she felt she had no choice want (FL2 265). M ost of the women indicated they had some sort of insur ance. However, coverage mainly encompassed traditional drug treatments and seldom paid out benefits for alternative treatments such as massage and acupuncture often found to give relief to fibromyalgia patients. Consequently, the women said they were force d to either manage with traditional treatments alone or pay out of pocket for non covered treatments. Christina spoke at great length about the amount of money she has shelled out for relief g to take care of this 206). tub and a Pedic bed that elevates the head and the 216). Moreover, for a time, Christina was on a regimen of natural herb al supplements in which 227). Some of the women have had to make a choice of whether to see a more costly rheumatologist the specialist most often to treat fibromyalgia or a primary care an) because he can prescribe me some of the meds that my rheumatologist was without me having to 102). Outside of the financial costs, the personal toll of fibromyalgia on the women also has be en great. Addison put it simply when she said
110 328). 9). A former hospital because she couldn on the (MO3 234). For Teddy, fibromyalgia meant the letdown of leaving graduate school coupled with a sense of disbelief from others. She stated: I felt like, oh, my god, I worked four years toward a doctoral degree and I never got it, feeling like, just kind of like a failure. You get those feelings, especially if you have friends or relatives which I do see it (fibromyalgia) as real ( MD1 250 ) Drug treatment side effects also have taken a toll, with some of th e women greatly reducing the amount of prescriptions they take or giving up medications altogether. Meredith, for one, has stopped prescription medications because she said she is in the ER 217). The frustration that Meredith felt about her experience with drug treatments is evident in this statement: could think that wo had allergic reactions to the t comfortable with taking and dealing with pain like that ( MD1 231 ) Even some of the new medications such as Lyrica and Cymbalta sp ecifically used to treat fibromyalgia have been problematic for some of the women Adele said she had been taking Cymbalta but stopped because the medication was exacerbating her stomach issues. April was on Lyrica for a time, but she stating that (MI1 70 ). of the drug but said she had been given te was going to 194)
111 Side effects from medications also can take a toll on relationships. Lexie talked about medications used to treat depression and anxiety conditions that often accompany a fibr omyalgia diagnosis and what that has meant for her intimate relationship with her husband The biggest 345). and, thus, not interested (MO3 316). 334). She elaborated: A lot of meetings and she flies out of town on business. We used to go places like that has caused us not to be as close, t oo. ( FL3 334 ) Fibromyalgia also exacts a price on friend and family relationships with some of the women interviewed stating people often feel hurt or neglected when they are forced to change plans at the last minute. Even so, ects (cancellations) now 310). Additionally, Meredith talked about friendships that 394). She went on to say: the three pe ople I have on a regular, constant basis are my rocks. But there was a lot more. I was always that have the patience e ar what I feel ( MA 1 2 92 ) d or in 23). Ellis said she has lost friends because
112 299). As a 299). Finally, son: always takin I was always ( ID1 235 ) Self care. Perhaps best described as a elf care re presents a major theme Self care generally encompasses the variety of measures t o address the physical symptoms and accompanying emotional concerns of fibromyalgia. Advocacy as a form of self education and a way to counter stereotypes is an extremely important part of self care as is the need to find the right doctors with the appropr iate attitude toward fibromyalgia as a diagnosis. Furthermore, a holistic approach, which entails balancing traditional (medical) and non traditional (alternative) treatments, appears to be key to self care for most of the women interviewed. As detailed i n Chapter 2 of this dissertation fibromyalgia as a diagnosis long has been a topic of debate. The women interviewed for this study appear to deal with the controversy through advocacy both to learn more about fibromyalgia for their own self knowledge an d to help correct misunderstandings others may have about the condition. Among the women interviewed, Meredith was one of the more proactive advocates, stating directly that y (MA1 55). Mered 53). She elaborated:
113 or done, to you. I try to ask for the notes that the doctor has taken and I keep my own records. I do that just so I can keep in the loop ( MA 1 49 ) Furthermore, Meredith presses on, outreach anything (she) 573). She also longs for more support, stating: I wish that we could just let everyone know in an easy to read, universal pamphlet Let people that deal with it every day explain it versus doctors to sell medication and things like that. I really wish there was more of a real, palpable outlet for people suffering and for family and friends to understand. ( MA1 567 ) Other women advocate on behalf of fibromyalgia sufferers by countering negative stere otypes Adele appeared particularly vocal about being typecast a drug seeker, re drug 278). Lexie advocated for herself and at the same time educated her family by putting g: support. I think that was really helpful for everybody. ( FL1 103 ) Christina talked about her husba and how she : you know those pamphlets and the book and stuff? I would read those to him out loud, and I think that helped ( MO2 363 ) herself with noted also ensures
114 gets it by telling him how I feel day to day pain, fatigue, where I am with it, the 279). When Catherine talks to others about fibromyalgia, she yalgia. She instead prefers to put distance between herself and the ill ness 326). in 267). 267). Another key dimension of the self care theme relates to medical care and finding a supportive doctor with the right attitude in treating fibromyalgia and who to patients. Some of the women interviewed struggled at some point or are still struggling with this aspect of their care However, Lexie is among the women interviewed who appeared to have found the right physician She said: hat could be ( FL1 395 ) Addison, who switched doctors after she moved to a different part of town, said was. This doctor told me he understoo d what I was going through Oh, my gosh. He just kept telling me almost how I felt ( MD1 231 ). When Adele
115 338). provide her an official diagnosis of fibromyalgia, she s and has a nice manner abo ut him, She further stated : He listens to everything you say. He responds to everything you say. He begins his appointments by running through a litany of questions You do you ( MA2 396 ) Standing in sharp contrast to these women is Meredith, whose experiences with doctors have been bewildering for the most part. She appeared especially distressed with her ents and dis regard for holistic treatments, 25) before (MA1 546) All of the women interviewed either currently were taking or previous ly had been taking some sort of prescription drug to manage their symptoms. Treatments mentioned range d from older drugs such as Flexeril for muscle spasms and Ativan for anxiety and depression to the newer drugs Cymbalta and Lyrica, both designed to block the transmission of pain sensations to the brain. As previously mentioned, most, if not all, of these prescription the women had tried any number of alternative treatments including hydr otherapy, yoga, massage, acupuncture, chiropractic tai chi, and Reiki, a stress reduction technique that employs a form of spiritual healing
116 overall well being. For example, I work on what I put in is good. You know, I mentally and physically try to stay as healthy as I 330). Izzie, too, is conscientious of what she puts into her body focusing eating right (FL2 115). Izzie, a follower of the natural health guru Jordan Rubin, also stressed how beneficial vitamins and supplemen 115). Likewise, Catherine said that no vitamins vitamin D, in particular (WA1 199). Lexie reaches out to the people around her to help stay centered suggesting : other things like are you getting depressed, are you getting anxious? Havi ng people around that can help you cope with things, I think, is really helpful. ( FL1 274 ) Finally, Miranda perhaps most aptly summed up the concepts of balance and well being in this statement: ental to my health. I guess as I have gotten older, you know, you get wiser or change a few things. You put more emphasis on what is truly important in life. You s really importan t family, close friends, and church. ( MO1 133 ) Image. The theme of i mage relates to the broad notion of self identity of fibromyalgia sufferers, public awareness of the condition and stereotypes of and medical beliefs toward diagnosis. Also key to image is the credibility or accuracy of fibromyalgia information and how fibromyalgia is
117 not only portrayed in the mass media but also represented in academic and scientific research. The women interviewed for this study were especially guarded when it came to self identity, having personally confronted negative stereotypes about fibromyalgia. Chief among the hurtful labels the women have experienced Meredith had this to say about her encounters in this area: psychological thing, but they (doctors) look at you if you get upset like o not show any emotion like that because s going on, or be considered or labeled like that. ( MA 1 493 ) Addison recalled feeling depressed after her doctor told her she had fibromyalgia The diagnosis alone would be enough to make anyone miserable, Addison said, but adding to her misery was the skepticism she faced from friends and family. Although she has more support today, she said she sometimes still encounters d isbelief. She elaborated in this statement: The friends and family that I would talk to about it (her early diagnosis), they find anything lived with that for several years. To some extent, a lot of people still feel like ( FL3 183 ) Lexie talked of an experience she ha d in trying to find a gastroenterologist who s, which is fricking
118 off the doctor from seeking drugs? Are you here just to get some kind of drug from us and then ( FL3 437 ) April echoed much of what these women and the others had to say about confronting negative stereotypes: A lot of people affected by it are, for a lack of a better word, very ignorant. The biggest 261) A couple of the women further suggested pharmaceutical companies marketing the latest drug treatments do little to help the image of fibromyalgia sufferers. Izzie said ercials) feel, 231). Meredith was much more critical, stating: The drug companies and everyone have it woefully wrong, where again, having someone a little o (MA1 349) The women also were careful about where they sought information on fibro myalgia and more trustful of sources that had been vetted through with them personally (MA1 168) Here the women primarily turned to the Internet. The online sources most often fibromyalgia were the non profit organization s National Fibromyalgia Association and Fibromyalgia Network as well as W eb sites oriented to medical research and health information such as Johns Hopkins, Mayo Clinic, and WebMD. While Teddy noted that 123), Lexie said the readability of the
119 sites varied from the level aimed at people in the medical field to a 129). However, umstances. 202). epth, 161). Meredith summed up her feelings this way: When you read factual (information) by doctors doing research for 20 plus year s on this, it also gives you some comfort in the fact that your symptom s are real and there are ways to treat it ( MA1 120 ) pertained to fibromyalgia pages on social media W eb sites, particularly Facebook (MA1 165). Overall, these W eb sites are seen as un supportive Lexie said it best in this statement: (Th ese) fibromyalgia W eb not helpful ( FL1 1 29 ) Perhaps a s a consequence of such negative media portrayals Christina said she is wary about revealing her fibromyalgia mation s so personal I 383). Christina a wan t to get that negative response (MO2 383).
120 Perseverance. erseverance primarily is defined by a sense of stick to itiveness, enduranc e, persistence, and resolve in the face avoiding stress, making lists, and putting on a persona or mask to hide pain from others. Among the more prominent strategies the women used to cope with the pain of fibromyalgia and associated symptoms involved scheduling their days and spreading out activities over time to conserve energy. For e xample, Meredith, for one, favors the to do list Whether it be running to the store or things to do around the house, I found t things accomplished. working 60 hours a week or making money or running a marathon. ( MA1 2 99 ) kno (FL2 194). plan generally one major event per d ay like I need to go to the doctor or the gr ocery store 370). April added that noting 162). Christina found she could continue to work at least part time with a schedule in which she worked a day and then had a 301). However, in contrast, Cassie said she could not afford to make such accommodations 270).
121 Both Catherine and Christina talked about hiding their pain from others or crawling inside a shell to keep people from seeing how fibromy algia affects them. In this regard, at acting happy and energetic (because people) 181). On the other hand, Christ ina stated: dying inside. People that know me really well can read through it now, though, so I guess ( MO1 286 ) hide her pain by staying quiet want to be the downer all the time, which I alw 255). Outside of pacing and masking strategies, the women interviewed just simply seemed to manage and hope for the best. Indeed, Adele, who referred to herself as I live with it and I just 161). She continued, emphasizing, 161). Miranda said she belongs to support groups and t 127). Furthermore even with medication, Christina said free, so I just s 25). Finally, speaking a bit more optimistically, Meredith and Teddy looked to the future despite having made accommodations for their fibromyalgia. Meredith said she is 319). Teddy summed up her outlook in this statement:
122 My take away and perception of it is that my life can really go on, and I can have a very full, active life. Fibromyalgia does hurt. It does cause fatigue, but not to sound cynical abo ut it going to kill you. ( MD1 189 ) Faith. generally is defined as a set of principles or beliefs, whether empathy, religious conviction or trus t in God or confidence in truth, value, or trustworthiness of a person, idea, or thing. As discussed in Chapter 2 of this dissertation, people with fibromyalgia fight a constant battle of pain, fatigue, and a myriad number of other ailments linked to the condition. One way some women interviewed for this study stay positive and hopeful amid their day to day struggles is through f aith in God or a higher power In particular, Ellis said 39). An of un to Probably in the last year well, no a couple of years, I have become very, very well, a lot more religious. I pray and do my prayers every morning Actually, when I am on my stationary bicycle, I do some o f my reading and my daily word reading, reading from Psalms. And I have been trying to memorize a couple of Psalms ( MO1 36 1 ) Miranda later added that her faith helps her in perspective 376). Not all of the women expressed their faith through specific references to God and religion. In particular, Catherine befor e her diagnosis, and
123 242). Catherine looking on (WA1 287). Furthermore, she said: A very common thread that I see is that they had faith that they would get better. They might not have faith in a higher power, but they trusted that ( WA1 289 ) Although Teddy did not directly mention She said her fibromyalgia is 258). Some women were looking to science to figure out the cause of fibromyalgia so effective treatments and possibly a cure could be developed. Both Adele and Christina 37; MO2 480). However, Addison especially implored scient ist s on fibromyalgia. I keep hoping and praying that that their research studies would hone in on one specific thing that you could do that would take away or make the pain just disappear. ( FL3 379 ) 321). Similarly, Meredith said: before. I guess if there was more research or more supp ort that was proof that people can beat this, I guess I would be a little bit more optimistic about the actual fibromyalgia diagnosis. ( MA1 332 )
124 Networks. Networks is a relationship concept that consists of family functioning, friendships, and social suppo rt. While the meaning of this concept varies by individual and circumstances, a common thread in this theme appears to be the strength of connections or ties within networks. The family environments of the women in this study varied from no or low involve ment to high involvement. Three of the women in particular mentioned they were estranged from either all members or just certain members of their family. Meredith, 505). Izzie 400) e, so I 411). after her diagnosis said he has since been more accepting (FL1 213). On the othe r hand, Lexie said her in laws both of whom also deal with chronic pain 325). She summed up her in I think it will still take them a really long time because they both deal with time M ine travels and it depends on how bad it is when. And it sucks, you know ? I f I can pack boxes today, I might not be able to pack boxes t really know when or if ever kind of really be there ( FL3 2 6 1 ) The spouses and partners of the women interviewed tended to be highly involved and supportive Ell
125 276). when I need to rest or pull said (ID1 230). varied based on how closely they i dentified with other members of the community. Online support groups Facebook in particular especially concerned Meredith, who said 144). She went on to whether (MA1 aro 154). Moreover Meredith up groups that you have 159). She e laborated later in this statement: can do that to you. But you want to go and talk to people and show that I can suffering can really take a toll on you. ( MA1 194 ) experience with a local support group. S he said: I just started going to a fibromyalgia support group here where I live. Talking to some of those people, going not just me? is really helpful, I think. Just hearing what other people are going through and the ( FL1 110 )
126 Overall, connections were important to all of the women intervi ewed. However, two women Teddy and Adele seemed especially appreciative of their encounters with fibromyalgia communities 270). Ad ele spoke in terms of have this connection with them. You know you can tell them about how you feel or (ID1 172). She elaborated by recounting a time she talked to a hospital patient who had fibromyalgia, stating: say I mean, you can read all you want, but yet you have to talk to other people at times. ( ID1 175 ) Time Embedded in other themes and throughout the interviews, the concept of time is exemplified in explicit statemen dealing with fibromyalgia symptoms and going to the doctor for diagnosis and treatment. For example, Meredith said her opinions t happy with the first answer 31). Adele say 10 to 15, actually (ID1 118). Some of the women attributed their symptoms to the stress of jobs or a hectic family life, and consequently, waited months or years before having their fibromyalgia symptoms check ed out. he went to the doctor she said (MO1 39). On the other hand, although Cassie said her symptoms began in
127 four years later (MA2 26). Office visits generally entailed more time waiting in an exam room to see a doctor than the time before seeing the doctor, who was in th 434). Information sources. The women interviewed for this study referred to a number of information sources for fibromyalgia. The source most often cited was the Internet with Facebook and health W eb sites c hiefly, WebMD among the most popular online sources Non profit organizationa l W eb sites devoted to fibromyalgia also frequently were mentioned by the women interviewed. Among the top organizations cited were the National Fibromyalgia Association, the Fi bromyalgia Network, and the National Fibromyalgia Institute Several of the women referred to books they had read that were written by well known doctors in the area of fibromyalgia research, including Jacob Teitelbaum Two of the women who had worked in t he medical field mentioned they had talked with representatives of drug companies about fibromyalgia. Interestingly, doctors themselves were rarely mentioned as a source of information on fibrom y algia. Theoretical Integration of Meanings The third research question in this study fibromyalgia relate to the understanding women have about their condition? To answer this question, the researcher compared the findings from the first and second research question s to determin e whether link s exist between the (RQ1) and the experiences of women fibromyalgia patients (RQ2). Based on the
128 qualitative framing analysis of magazine articles on fibromyalgia and the analysis of the transcripts of a pilot interview and interviews with women fibromyalgia patients, th e following represents some of the pathways women use to make sense of fibromyalgia (Table 4 5) As discussed in the qualitative framing analysis section, lifestyle was the most dominant media fr ame on fibromyalgia. Magazine articles prominently displaying the lifestyle frame related to self care, social support networks, and personality traits of fibromyalgia sufferers. Self care in the magazine articles focused on the mind and body emphasizing (Kossoff, 1999) (Gormley, 2002) Similarly, the women interv iewed displayed an emphasis on the holistic caring for both mind and body in managi ng their fibromyalgia symptoms. Catherine gives a good illustration of this point with this statement: f what works for me, like I know my body responds better to a high protein diet, not a low learned also that I have to get a certain amount of sleep, but not too much. ( WA1 217 ) Additionally, Meredith just trying to do the things that I do, enjoy, an d make me happy (MA1 227). As suggested in the lifestyle media frame, support systems or networks can either promulgate such notions. This belief disbelief dichotomy especially was visible in the family functioning networks theme in the interviews. Some family members of the
129 Others for example took some time to acknowled ge the very real nature of the condition. Lexie elaborated: think in the beginning, it was really rough, and ( FL1 213 ) The lifestyle media frame suggest ed fibromyalgia sufferers often exhibited certain characteristics (Davidson, 1985) Echoes of these traits were visible in the cost and loss themes identified in the interviews. One example from the cost theme includes this statement fr om Meredith talking about the toll fibromyalgia has had on her daily life : everything was going to be perfect, clean. A nd 270). The loss theme identified in the interviews partly involv ed the effect of fibromyalgia symptoms on the women interviewed. Miranda (MO1 243). While the lifestyle media frame focused more on negative characteristics of fibromyalgia sufferers, the women interviewed revealed some positive traits primarily in the perseverance theme. Cassie, for example, looks to the future with optimism. She said 286). The No. 2 media frame was legitimation, primarily exemplified by scientific research to substantiate, verify, or otherwise provide credibility to a fibromyalgia diagnosis. The faith theme in the interviews corresponds directly with legitimation with
130 cures just feel like anyone else that there could be so mething more than a magic pill like an 25). Equally discouraging Meredith said, is on fibromyalgia adding, icle from a renowned doctor, would you look at ke it and throw it in the trash (MA1 324). also focus on theoretical explanations for possible causes of fibr omyalgia. Scientific hypotheses have ranged from stress to genetic predispositions. Indeed, nearly all of the women interviewed indicated some sort of stress in their lives job and family demands, for example with a handful of the women mentioning moth ers, aunts, or cousins who also had fibromyalgia. Additionally, trauma such as a car accident or childhood abuse has been suggested to contribute to fibromyalgia. Correspondingly, some of the women interviewed recalled similar events suggesting a possible connection to their current fibromyalgia diagnosis. Izzie shared her experience in this statement: Yeah, the research that I have done (suggests) the reason that people get fibromyalgia is from some trauma, whether it be a car accident or an abusive child childhood, and in 2007, my mother and my brother died within three weeks of each other. Any of that, I think, could attribute to that. ( FL1 137 ) The legitimation media frame also suggested fibromy logic defying and perplexing symptoms prompt questions about the credibility of those who live with the condition. The image theme found in the interviews substantiates this idea in several ways. One is the reluctance of some doctors to label fibro myalgia as a diagnosis. Adele, who had been seeing a rheumatologist since the mid 1980s
131 problems said (MA2 45) her condition MA2 95). A nother example of the problem of credibility lies in the negative public stereotypes that drape fibromyalgia sufferers. Social media W eb sites Facebook in particular present special challenges to fibromyalgia sufferers self identity and credibility. unhealthy and really need to take a look at your l 119). Such public attitudes are especially concerning to Meredith, who worries how she might be perceived by others. She elaborated: Those are the things that scare me when family or a friend who wants to further their education se e when they try to understand what I go through. I because someone has the freedom on the Internet to say whatever they want. ( MA1 144 ) The mystery frame which tied with the industry fra me for third place overall, a sub category of loss the women focused on the effect the puzzle known as fibromyalgia ha s had on their lives. related to questions prompted by the inab Additionally, the mystery media frame is echoed in the amount of time many of the women interviewed spent in going to doctors seeking answers to their troubling illness.
132 mphasis on drug and non drug treatment enterprises and management issues involved in fibromyalgia care connects most directly with the costs theme in the interviews. The biggest industry costs for the women related to insurance and money spent o n alternati ve relief measures not covered under most insurance plans 469). For example, Lexie 475). She said she also would like to consult a nutritionist about her fibromyalgia related stomach issues. However, as with a cupuncture, she said, 475). 263). But then she found out her insurance would not cover the cost a 263). Additionally, Christina said she had spent also had bee n on a weight loss program comprised of dietary supplements. At one justify con 234). The stigma media frame was characterized by the use of dismissive and that associate fibromyalgia wit h psychological conditions (Groopman, 2000) Although
133 stigma was the least dom in a nt media frame identified, hints of the frame permeated several of the interview themes perhaps, most notably, the loss theme where the women r ecalled Many of the women by their doctors, who would spend too little time with them and often to other physicians. statement: When am I going to meet a doctor that actually cares or wants to h a ve a respectful I can see that if I w alked in screaming or crying about all these not go and suffer every day and not be in the loop of any medication or do you keep going and plan on getting beat down? ( MA1 4 7 4 ) Finally, fibromyalgia. T he an alysis of magazine articles revealed differences in the media frames over the 30 year time period under study. For example, the mystery media frame tended to dominate early on in articles written in the 1980s and early 1990s, with the industry media frame not coming into view until the early 2000s. While the lifestyle media frame was prominent throughout the analysis, articles appearing in the 1980s tended to focus on characteristics or personal traits of fibromyalgia sufferers, shift ing to a focus on treat ments and self prominence in the 1990s and 2000s reflects the growing interest in fibromyalgia research. Likewise the stigma media frame figures prominently in more recent articles in the 2000s and 1990s than in early articles in the 1980s. In the interviews, t he concept of time is more implicit than explicit. The women interviewed varied in age and
134 length of time of diagnosis. Some of the older women in the ir 50s and 60s were diagnosed in the late 1980 s and early 1990s, when fibromyalgia was a relatively new phenomenon and doctors were more at a loss for diagnosis Adele, 63, in particular, D1 before the 1990s my blood 125). The stigma media frame also may be reflected in the experience of the more recently diagnosed Meredith, 29, who had this to say: H ow d H ow do you know that H just automati (MA1 416) In Chapter 5, an analytic scheme is presented to illustrate these findings on what patients use to make sense of fibromyalgia. The chapter also discusses the theoretical framework for a proposed theory, drawing on existing mass communication and health communication theories.
135 Tabl e 4 1. List of periodicals and number of articles on fibromyalgia dating from 1980 to 2011 Magazine Title Number of articles Magazine Title Number of articl es Prevention 10 Saturday Evening Post 1 Ladies Home Journal 3 The New Yorker 1 Psychology Today 3 Time 1 Delicious Living 2 Flying 1 Good Housekeeping 1 Better Homes & Gardens 1 American Health 1 Newsweek 1 Health 1 Science News 1 s 1 O, The Oprah Magazine 1 Macleans 1 US News & World Report 1 McCalls 1 1 Total 24 Total 10 Tabl e 4 2 List of number of articles on fibromyalgia found in periodicals between 1980 and 2011. Year Number of articles Year Number of ar ticles Year Number of articles 1980 0 1990 2 2001 4 1981 0 1991 0 2002 3 1982 0 1992 0 2003 4 1983 0 1993 1 2004 1 1984 0 1994 0 2005 1 1985 1 1995 0 2006 2 1986 0 1996 1 2007 1 1987 1 1997 1 2008 0 1988 1 1998 1 2009 0 1989 1 1999 3 2010 1 20 00 3 2011 1 Total 4 Total 12 Total 18
136 Tabl e 4 3 List of characteristics found in fibromyalgia coverage in periodicals Length, number of articles Authors of story, number of articles Main s ources, percentage of articles where sources quoted 500 wor ds or less, 14 Staff or free lance journalists, 24 Foundations, non profit agencies, 57 1,000 words or less, 21 Medical professional experts, 6 Researchers and research studies, 47 Average = 1,226 words Patient (first person), 1 Fibromyalgia experts, 40 Shortest = 208 words No byline, 3 Patients, 23 Longest = 4,768 words Physicians, 20 Tabl e 4 4 List of dominant frames found in headlines and body text s of fibromyalgia coverage in periodicals. Rank Media frame Number, percentage of headlines displa ying frame Number, percentage of body texts displaying frame 1 Lifestyle 6, 18 24, 71 2 Legitimation 10, 23 22, 65 3 Mystery 11, 32 13, 38 3 Industry 3, 9 13, 38 4 Stigma 4, 12 2, 6 Tabl e 4 5 Relationships between theoretical categories found in media texts and interview transcripts Media frame Interview theme Relationship Lifestyle Self care Networks Loss (costs) Perseverance Mind body emphasis Belief disbelief dichotomy Quality of life toll Coping measures Legitimation Faith Image Medical/sci ence knowledge Stereotypes Mystery Uncertainty Effect of fibromyalgia on women Industry Costs Financial, relief measures Stigma Loss Doctor, public attitudes
137 CHAPTER 5 DISCUSSION This study was undertaken to answer one guiding question: Where is t he patient in the long standing debate on fibromyalgia and its disease status? The question was divided into three parts: (1) How is fibromyalgia framed in magazine articles dating from 1980 to 2011, (2) What meaning do women with a diagnosis of fibromyalg ia ascribe to their experiences, and (3) How does the media framing of fibromyalgia relate to the understanding women have about their condition? This chapter addresses the findings of the study in relation to the original questions and proposed theoretica l model links the findings to the current literature, and outlines potential future research related to this topic. Limitations of the study and application also are examined. A Model of Mediated Pathways to Meanings of Fibromyalgia Communication within a meaning making process generally involves giving and receiving information; providing and taking instruction; and applying influence. The meaning making and information needs of people with a chronic illness such as fibromyalgia primarily entail communica tion about their illness and the various treatment options and social support. Meaning can be derived directly through communication about and experience with an illness or indirectly through socio cultural influences such as attitudes, values, and beliefs that serve as mediators of meaning making The information collected from the qualitative framing analysis of 34 magazine articles on fibromyalgia and transcripts of interviews with 13 women fibromyalgia sufferers suggest a model of mediated pathways to m eanings of fibromyalgia diagnosis that incorporates intrinsic and extrinsic mediators of communication.
138 First, findings evoke a number of mediators that contribute to meanings of fibromyalgia. A mediator is a qualitative or quantitative variable that affe cts the direction or strength of the relationship between an independent variable and a dependent variable (Baron & Kenny, 1986) Figure 5 1 provides examples of potential mediators along two continua, one related to the degree to which the factor is intrinsic or extrinsic to fibromyalgia patients and their meaning making relationships, and the other related to the degree to which the factor is variable. Intrinsic mediators are individual characteristics that either directly or indirectly tap into affective and cognitive processes for example, self awareness, self efficacy, self identity, and emotional state. Extrinsic mediators include attributes of family and social environment, cultural values and beliefs, and media coverage The stable variable dimension reflects the degree to which the mediator is changeable. The women interviewed for this study equated their fibromyalgia diagnoses with a number of negative meanings : (1) a sense of loss, or missing out on life ; (2) an air o f uncertainty, or need for cautious living ; (3) the toll on quality of life ; (4) the difficulties of balancing care ; (5) the need to protect and improve self image ; (6) perseverance amid adversity and challenges ; and (7) diminished faith for effective trea tment s or cure These associated meanings of diagnosis may be influenced by a number of intrinsic and extrinsic factors that perhaps could be modified to help promote more positive experiences Health communicators who can identify modifiable mediators to meaning of illness can play a key role in improving communications about controversial chronic conditions such as fibromyalgia, and thereby help patients derive more positive meanings from their experience s
139 For example, emotional state is an intrinsic fac tor with a direct relationship to the meaning of loss, which encompasses overwhelming feelings of worthlessness, hopelessness, and anxiousness. Communication that focuses less on the questions of fibromyalgia and the medical uncertainty surrounding diagnos is and the vagueness of symptoms and more on the research under way to find answers could help turn the negative meaning of loss to a more positive sense of hope. Additionally, mediating the meaning s of balancing care and seeking credibility are the intrin sic dimensions of self awareness self efficacy, and self identity Here, one i mportant consideration for health communicators would be to offer up inspiring first person accounts of fibromyalgia sufferers who have learned to cope with the vagaries of thei r illness. Such examples could serve as positive testimonials that fibromyalgia does not have to be what defines a per son. The concept of time for fibromyalgia sufferers encompasses a number of factors, including how long it takes to receive a diagnosis an d how much effort is spent on dealing with symptoms. Although time is an intrinsic mediator that is not necessarily modifiable time does vary among patients of fibromyalgia shows the diagnosis as evolving over t ime. For instance, e arly stories primarily focused on the mystery of the illness, with more recent articles centered on research findings related to new treatments and possible causes The experiences of the women interviewed furthermore reflect the dialog ues taking place at the time when they were diagnosed. As such, a woman diagnosed during the time when fibromyalgia was veiled in much more mystery likely would derive a different meaning from her experience than a woman who is diagnosed today. Health comm unicators who
140 understand the history and evolution of an illness especially a controversial chronic condition such as fibromyalgia may be able to do a better job of segmenting audiences and crafting effective messages that resonate with intended receiv ers. Inasmuch as intrinsic mediators can have powerful influences on co mmunication processes and meaning making, extrinsic mediators informed by contextual elements of interactions also can have powerful effect s on the meaning of illness Health communicat ors who understand the context s or situational environments in which communication takes place will be better able to identify extrinsic mediators that are the making process. While a ny number of contextual elements may influence meaning making relationships, the women fibromyalgia sufferers in this study and social support networks, and (3) information sources and the media P hysicians attitudes or beliefs about the existence and treatment of fibromyalgia can influence how patient s derive meaning of the condition in both positive and negative ways. Within this context, empathy and trust are important for building positive relationships. Doctors who e xhibit empathy or understanding of what a diagnosis of fibromyalgia means to patient s generally are viewed by patients as more trustworthy, sincere, competent, and accepting (Berry, 2007) Trust is especially important to fibro myalgia patients who often mention ed feeling vulnerable and helpless. Doctors can enhance trust by using supportive communicative behaviors or hinder trust by being defensive. The women in this study mentioned non supportive behaviors by doctors such as a refusal to discuss new research findings on fibromyalgia or accusations of
141 drug seeking on the part of the patient. These behaviors ostensibly promoted negative meanings of fibromyalgia, specifically with regard to care, credibility, and faith. A fibromyal also can either reinforce negative or undermine positive experiences in the meaning making process es of illness. For instance, e motional support and self care help can be enhanced t hrough positive networks that provide tangible aid such as transportation to medical appointments and non tangible assistance that may simply involve lending a sympathetic ear. Fibromyalgia patients without positive networks to draw on may attach more nega tive meanings to their illness than those who have more positive support. Media coverage of a controversial health issue like fibromyalgia can influence not about an illness but also public attitudes and opinion. Thi s study shows i nformation sources may strengthen negative stereotypes associated with fibromyalgia simply in the manner in which the illness is portrayed or framed Indeed, four out of the five media frames identified here lifestyle, mystery, industry, a nd stigma exhibit negative tone s that are further reflected in the meanings of fibromyalgia as expressed by the women interviewed Additionally, the women noted, may do little to enhance the image an d credibility of sufferers because the ads do not accurate ly represent what it means to live with the chronic illness The women further expressed concerns about accuracy of some information on the Internet S ocial media W eb sites that provide open forums for public comment regardless of direct knowledge of or relationship to an issue were especially worrisome In response to negative stereotyping of fibromyalgia in the
142 media, the women in this study said they were reluctant to disclose their diagnoses and often would mask or hide their pain to keep people fr om making judgments about them. Finally, t he findings presented in this study further suggest a model that can serve as a starting point for identifying theoretical mechanisms that might account for how people with a diagnosis of fibromyalgia make meaning of their diagnoses. The proposed Model of Mediated Pathways to Meanings of Fibromyalgia (Figure 5 2) demonstrates making through a direct p athway with no mediators between or indirect pathways comprised of intrinsic and extrinsic mediators. The following subsection elaborates on the proposed model and outlines theoretical statements indicated by the model. A Grounded Theory of Meanings of Fib romyalgia Social construction of reality is the product of how people interact and their use of symbols to create meaning about their world (Berger & Luckmann, 1967) A critical activity in this social construction of reality i s framing which helps shape the perspectives through which people see the world. Framing is commonly referred to as a bottom up process used to craft effective messages. However, framing also entails delimiting subject matter and drawing attention to cert ain informational elements surrounding an issue. Thus, framing involves processes of inclusion and exclusion, as well as emphasis. Entman (1993) summarized the essence of framing processes in the following statement : Fra ming essentially involves selection and salience. To frame is to select some aspects of perceived reality and make them more salient in the communicating text in such a way as to promote a particular problem definition, causal interpretation, moral evaluat ion and/or treatment recommendation for the item described. Frames, then, define problems determine what a causal agent is doing and costs and benefits, usually measured in terms of cultural values; diagnose causes identify the forces
143 creating the prob lem; make moral judgments evaluate causal agents and their effects; and suggest remedies offer and justify treatments for the problem and pred ict their likely effects. (p. 52 ) A fundamental premise of this dissertation is that the notion of framing pro vides a useful starting point for exploring not only media messages about a controversial chronic illness but also the underlying psychological proce sses that people use to examine information, make judgments, and draw inferences about the ir illness. A the ory of the communication of meanings of fibromyalgia sugg ests how patients use their experiences to ascr ibe meaning to their diagnoses. The proposed theory is built on the core findings of the analysis of data, specifically the frames found in magazine art icles on fibromyalgia and the themes identified in transcripts of interviews with women fibromyalgia sufferers The five frames found in the media analysis can be directly linked to the meanings of fibromyalgia diagnosis derived from the interview themes. The frames and their corresponding meanings of diagnosis are: Lifestyle, reflecting individual personality traits, attitudes, values, and behaviors of fibromyalgia patients. People with fibromyalgia often find a need to persevere in the face of adversity, often devising coping strategies to hide their illness from others. This aspect of the lifestyle frame is apparent in the derived meaning of masking the pain. Additionally, this that include mind body treatments is apparent in the balancing act meaning of diagnosis derived from the interview themes Legitimation, comprising various scientific postulates on the cause, diagnosis, and treatment of fibromyalgia. Despite the growing body of research suggesting fibromy algia as a valid diagnosis, credibility is still an issue and psychological aspects of patients are still cited in perpetuating the illness. Thus, this frame helps to inform the derived meaning of seeking credibility. Mystery, encompassing the ambiguity of a fibromyalgia diagnosis and the puzzling and perplexing symptoms of the illness that confound the medical community. The mystery surrounding a diagnosis of fibromyalgia can encase sufferers in fear and doubt that in turn may lead them to adopt an approac h of liv ing cautiously. Industry, concerning profit making ventures and non profit enterprises associated with the culture of fibromyalgia. The monetary and non monetary costs involved in
144 a diagnosis of fibromyalgia can be high, exacting a toll on patient quality of life. Stigma, referencing demeaning and dismissive labels indicative of medical and lay beliefs and ideologies toward fibromyalgia. This frame suggests image lowering stereotypes of fibromyalgia sufferers that inform the meaning o f seeking credibility. Seven of t he 10 themes and sub themes identified in the interviews serve to inform the meanings of diagnosis They are: Loss characterized by overwhelming mental and emotional exhaustion and physical debilitation that often keeps fi bromyalgia sufferers from taking part in activities. The meaning derived from this theme is missing out. Uncertainty typified by expressions of doubt and fear related to the unpredictability of fibromyalgia that lead patients to always be mindful of the e ffect of their actions on their health. The meaning with in this theme is living cautiously. Costs associated with the monetary and non monetary toll of fibromyalgia, including drug and non drug treatments and quality of life issues. The underlying meaning in this theme is exacting a toll. Self care exemplified by the variety of measures used to address the physical symptoms and accompanying emotional concerns of fibromyalgia sufferers. Approaches typically are holistic, necessitating a balance of traditio nal and non traditional treatments that informs the meaning of balancing act. Image distinguished by the broad notions of self identity of fibromyalgia sufferers, public awareness of fibromyalgia, and stereotypes of and medical beliefs toward fibromyalgia sufferers and diagnosis. These notions entail aspects of legitimacy and credibility and hence, the meaning of seeking credibility. Perseverance defined by accommodations and coping measures employed by fibromyalgia suffer er s to not only make the best of a bad situation but also to hide their pain and illness from others. The meaning derived from this theme is masking the pain. Faith symbolized by a set of principles or beliefs, whether through empathy, religious conviction or trust in God or confidence in truth, value, or trustworthiness of a person, idea or thing. The hope expressed by fibromyalgia sufferers that a cause cure, or effective treatments would be found for the illness underlies this Additionally, m emo s used to record intermediary findings from the interviews
145 Memo writing is a n essential element of the grounded theory process (Charmaz, 20 06) In this study, memo writing aided the el aboration of categories and the definition of relationships between categories. The identification of categories was done through multiple readings of texts Excerpts of texts were input into cells on Excel sp readsheets, facilitating the identification of relationships between categories. Memos evolved simultaneously, meaning ideas were grown and incubated through questioning and data gathering rather than through a series of iterative steps. Some ideas failed or did not stack up in the final analysis. And, s ome connections made early on proved insufficient through the addition of data and were not incorporated into the final model. T he researcher also conducted follow up interviews with two of the participants to discuss and refine the proposed theory. The participants in the follow up interviews were chosen randomly from the list of women in the first interview who had indicated a willingness to take part in any follow up discussions Neither of the women in th e follow up interviews disagreed with the model as outlined to them nor did they have anything to add to the proposed theory. Thus, the following propositions of communication of meanings of fibromyalgia are derived: Proposition 1. Media framing of fibromy algia can have a direct influence on making processes The rationale for proposition 1 stems in large measure from the findings to the research question: How does the media framing of fibromyalgia relate to the understanding wo men have about their condition? Inasmuch as the themes identified in the interview transcripts of women with fibromyalgia reflected the frames found in the
146 meaning making processes of women with fibromyalgia is apparent. Proposition 2. Media framing of fibromyalgia can have an indirect influence on making processes through intrinsic and extrin sic mediators of communication. T he rationale behind p roposition 2 is located in th findings relating to the research question: What meaning do women with a diagnosis of fibromyalgia ascribe to their experiences? The women interviewed place a lot of importance on finding the right doctor who will wo rk with them and having a supportive network of family and friends who will understand and accept them. Most of the women cited concerns with accuracy and bias of information in the media and further suggested media portrayals of fibromyalgia contributed t o the many challenges they faced in their relationships with doctors, families, and friends Proposition 3. diagnosis meaning making processes. The rationale for proposition 3 lies partly in t he results of the 30 year review of magazine coverage that stem from the research question: How is fibromyalgia framed in magazine articles dating from 1980 to 2011? The frames found in the analysis of articles showed a progression of early frames relating t o mystery and stigma and more recent frames of legitimation and industry Moreover the experiences of the women interviewed provide further justification for proposition 3. The women varied in age and the number of years they had been dealing with fibromy algia. The experiences differ ed from those of the older women in this study. For example, while the
147 younger women ascribed meanings of fibromyalgia that were more closely reflected in recent frames found in the media analysis t he older wom en recalled experiences more closely aligned with earlier media frames. Proposition 4. Social distance of networks can affect the quality of family and support network relationships. The definition of social distance provides the underlying rationale for p roposition 4. Social distance refers to the acceptance or rejection of social interactions between and among individuals belonging to different groups. In this case, groups can mean people who have fibromyalgia versus those who do not. The women interviewe d for this study spoke of a lack of empathy from their doctors and their family, and friends Some of the women also talked about the size of their friendship network having dwindled to the point of being practically non existent. Consequently, negative di stancing approaches such as these lower the quality of network relationships. Proposition 5. efficacy and emotional state. The rationale for proposition 5 i s informed by the women interviewed. The mainly center on socio emotional tasks such as partnership building or finding a doctor who will work with them However, d octors by training generally focus more on instrumental tasks that entail giving information and asking questions. Doctors who understand someone willing to listen, to be empathetic were few and far between for the women in this study. Additionally, the biggest comm unication mistake that doctors seemed to make with the women fibromyalgia suffer er s interviewed was not allowing or
148 encouraging them to ask questions. This, in turn, led to the women complaining of As outlined here the proposed theoretical model and propositions together describe how women with fibromyalgia come to an understanding, or make meaning, of their diagnosis. This constitutes the theoretical framework. With construction of the proposed theor y complete, the next step is placement of the theory in the larger discourse of the field more specifically, to explain how the theory relates and contributes to existing theory (Charmaz, 2006) Links to Current Literatur e Charmaz (2006) suggested that the theoretical framework be drafted in relation to the constructed grounded theory how the proposed grounded theory of meanings of fibromyalgia relates to existing mass media public relations, and health communication theories, as well as how these theories can complement the propositions offered by the proposed grounded theory Specifically, this study draws on s ocia l construction of reality theory (Berger & Luckmann, 1967) f raming theory (Goffman, 1974; Entman, 1993) s ocial cognitive theory (Bandura, 1977) t ranstheore tical model and stages of change (Prochaska, Redding, & Evers, 2008) and s ocial networks and social support (Heaney & Israel, 2008) These theories and frameworks are elaborated on in the following subsections. Social Construction of Reality S ocial construction of reality refers to the way in which individuals present themselves through social interactions, with perceptions of reality colored by individual beliefs and backgrounds (SparkNotes Editors, 2006) In social constructionist literature,
149 reality as constructed rests on four basic suppositions: (1) Reality is understood through human experience ; (2) social interactions in force at a particular point in time determine categories of language ; (3) conventions of communication determine how reality is defined ; and (4) communication behavior constitutes the social construction of reality (Gergen, 1985) Reality for the women in this study on fi bromyalgia and meaning making is a product not solely of their own making Rather, the women are engaged in a complicated mix of negotiations and social interactions that inform their reality or experience and, thereby, serve to shape their identities, thinking, and behaviors. The influenced how the women not only perceive themselves but also how they are viewed by others Indeed, t he concept s of identity and image are evident in this current study, with many of the women interviewed expressing concerns about support group membership leading to public associations of disability. Christina, for example, voiced her concerns about self identity in this statement: I had gon e to a fibromyalgia support group after my initial diagnosis. I only went twice because the room was filled with a bunch of women that, (in) my perception were whining, complaining, getting disability, or on disability. Their lives were so poor quality. T what I wanted to see. I wanted to go to a support group to give me want to be. (MO2 170) As stated in Chapter 2, the basic issue betw een the lay and medical models of health and illness is whether the two can be universally defined or are relative to an individual and labeled or identified in some fashion by cultural and social norms. In fact the fibromyalgia sufferers in this study su ggest they have been victimized over time by
150 These negative societal interpretations correspond with the stigma and lifestyle frames foun d in the media analysis of this study. The stigma frame suggested demeaning labels in referring to fibromyalgia and the lifestyle frame focused on personality traits and characteristics that did not necessarily depict fibromyalgia sufferers in a positive l ight. As a con sequence, the women interviewed said they felt their credibility and image to be suspect in the eyes of family and friends. By the same token Meredith spoke of experiences she has had with doctors who have told her that her symptoms were all 64). A key assumption in social construction of reality is that gaps exist between what one group views as real and what another experiences (Parrott, 1996) The media contribute to experiential gaps of fibromyalgia sufferers by omitting information such as the need for social support, which is especially important to individuals with chronic illnesses. Furthermore, t n citing authoritative sources namely, physicians who are at odds when it comes to the diagnosis of fibromyalgia serves to focus the story in the direction of who is being quoted. A patient centered approach to health coverage woul d offer alternative perspectives to the dominant frame provided by individuals in power as transmitted through the media (Andsager & Powers, 2001) or on support networks or the environment and issues of care. Meredith offers an alternative perspective in this statement: Why not take the surveys and opinions of everyone suffering all these women suffering every day that still have to be strong? You know, the
151 family and your life and yourself and all you see are healthy, happy people. se, but they still need to maybe do a little bit more research and really relate to people. (MA1 357) According to Carey (1992) reality but multiple realities. Realities cannot be exhausted by any one symbolic form, be it (p. 63) Thus, the basic premise behind the social construction of reality appe ars to be how and why individuals view the world in a particular way and what role the media have in shaping that view. M eaning making for the women with fibromyalgia in this study encompass es emphasis on how social and cultura experiences of illness. effectively serves to limit the number of alternatives receivers have to construct social reality (Pan & Kosicki, 1993; Reese, 2001) Lexie offered this statement as evidence of media framing contributing to gaps of knowledge by omitting information that might help women with fibromyalgia better understand their illness and perhaps make more inf ormed decisions on their health: I think sometimes a lot of the articles are published just on the pain. They the G I (gastro intestinal) W eb site to see if they mention fibromyalgi a. Some of the main articles, like the big articles that I found that really went into detail, did say, you know, this, this, and this are sometimes really related. They may not be caused by each other, but people with fibromyalgia tend to have these thing s. That was really, I guess, affirming for me alone with having 10 different things going on in my life. There were other people that had it as well. (FL1 140) Here, a n argument might be made that if s knowledge of fibromyalgia individuals may be unable to distinguish between real and mediated events. Additionally, a simplistic yet powerful approach to the social
152 construction of the meaning of fibromyalgia may be to suggest that individuals know r eality as that which the media both show and tell them about fibromyalgia. The following subsection on framing theory may serve to further explain this implication. Framing Theory een framed in magazine articles over the last 30 years. The function of frames is of particular interest in this study i nsofar as frames contribute to the interpretation and evaluation of the social world (Entman, 1993; Tuchman, 1978) Entman (1993) states that f make [it] more salient in a communicating text, in such a way as to promote a particular problem definition, causal interpretati on, moral evaluation, and/or treatment S pecifically, Entman (199 3 ) suggested that frames emerge in media texts through the presence or absence of certain key words, sources of information and sentences that form thematic clusters. Consequently, media framing has been said to influence public understanding of an issue (Gans, 1983; Pan & Kosicki, 1993; Tuchman, 1978) fibromyalgia offers proof of the media framing of health issues and meaning making on a controversial topic. As suggested in the proposed Model of Mediated Pathways to Meanings of Fibromyalgia, the media frames of lifestyle, legitimation, mystery, industry and stigma can have a direct or indirect effect on how women with fibromyalgia make sense of their illness. None of the five frames found in the media analysis is positive in tone. In fact, the overall tone of four of the frames lifestyle, mystery, ind ustry, and stigma is decidedly negative, with the tone of the remaining frame of legitimation more neutral. The negative
153 tone of the media frames also appears to link directly and indirectly with the majority if not all of the themes found in the int erviews. Findings in this study further suggest a media focus on the fibromyalgia debate instead of on the needs of patients. In fact, t he largest number of articles in the media analysis of fibromyalgia magazine coverage concentrated on lifestyle traits a nd behaviors Th e lifestyle frame as defined in this study essentially blames fibromyalgia sufferers for not conforming to public images of good health The frame further implies that people with fibromyalgia are little more than complainers and malingerer s Future research may look at the implications of journalistic approaches to writing about various health topics, particularly conditions pre dominately considered to affect women or a n at risk population. Another indication of the source dominant view fou nd in this study relates to drugs and side effects. The women interviewed consistently mentioned the debilitating effects of drug treatments, yet side effects of drugs were not addressed in any of the magazine articles examined in this study. The legitimat ion frame identified in the media analysis offers a more positive, hopeful outlook for fibromyalgia sufferers Furthermore, the women interviewed stated that articles on research on treatments and causes of fibromyalgia tended to alleviate fears generated by the other frames. The women also expressed gratitude to the researcher in this study for giving them an opportunity to tell their stories. However, one implication here may be that more stories in the media need to be told with the patient in mind. Just two of the magazine articles examined as part of this study were written from O ne article was a first person account of a fibromyalgia
154 sufferer weight loss journey and the other, an account by a counselor addressing the toll Finally, media coverage of health particularly controversial chronic illnesses such as fibromyalgia requires journalists to go beyond reporting new medical procedures and research to contextualizing i nformation in a way that provides patients with enough information to help them make sense of their illnesses. This study demonstrates a media focus on drug treatments and self care regimens such as yoga, massage, and acupuncture as relief measures for the pain of fibromyalgia. Less attention is given to the importance of support systems. Thus, a gap exists between readers with fibromyalgia and the potential for help in improving their environments. Social Cognitive Theory Much like framing, s ocial cogniti ve theory is a media influence model that emphasizes the direct effects of messages on audience attitudes and behaviors While the path from message to attitude may be complex and multi layered, the social be understood by examining the processes by which the message (or source or persuasion situation) influences a (Perloff, 2009, p. 262) Within a social constru ctivist paradigm of human functioning, individuals cannot effectively construct meaning in isolation. L earning is achieved through the interaction of personal factors, behaviors, and the environment. S ocial cognitive theory provides a basis for understandi ng the acquisition of knowledge by explain ing how these three interactions personal, behavioral, and environmental are constantly influencing each other (Bandura, 1977; Bandura, 2001) The first interaction between the person and second
155 interaction between the person and the environment encompasses human beliefs and cognitive competencies that are developed and modified by social influen ces and structures within the environment. The third interaction between the environment and behavior entails his or her envir onment, with that behavior in turn modified by environment. Similarly Jones (1989) stated that behavior is controlled by situations but rather that the person is construing the situations differently and thus the same set of stimuli may provoke different responses from and reciprocal determinism in the development of perso nality. According to Bandura, a system in which self efficacy plays an essential role. Bandura (1995) defines s elf efficacy as the b required to manage prospective situations (p. 2) Among the more widely known social cognitive constructs, self efficacy pertains to an belief in his or her ability to succeed in a particular situation (McAlister, Perry, & Parcel, 2008) Bandura described these perceptions as determinants of how people think, behave, and feel (Bandura, 1994) Self efficacy can play a major role in how fibromyalgia sufferers meet the daily challenges of living with the chronic pain and other associated symptoms of their illness For example, t he lifestyle media frame found in this stud y offers a vivid illustration of efficacy concept through suggestions that patients who
156 take charge of their own care were in better control of their symptoms (Kossoff, 1999) Teddy further prov ided an example from the interviews in this statement : My take away and perception of it (fibromyalgia) is that my life can really go on, and I can have a very full, active life. Fibromyalgia does hurt. It does cause fatigue, but not to sound cynical about i t I way but 189) Additionally, some of the women interviewed for this study exhibited a stronger sense of self efficacy than others. In fact, the women who seemed to take a more holistic approach to their care appeared happier and more determined not to let fibromyalgia get them down than the women who followed a course of treatment primarily centered on prescription drugs. More recently, Bandura (2001) wrote tran sformed the nature, reach, and loci of human influence social realities provide vast opportunities for people to bring their influence to bear on (p. 17) T he influence of the Internet and more specifically, social media W eb sites clearly affected several of the women interviewed for this study. Indeed, m any of the women became emotional when they talked about the effec t the n egative stereotypes espoused in Facebook comments had on their self identity. The following statement by Meredith offer s an especially passionate example of the influence of the extrinsic mediator information source on her intrinsic emotional well b eing and self identity : lazy pe but that. (MA1 131)
157 Transt heoretical Model and Stages of Change The transtheoretical model uses stages of change to interpret processes and principles of change across major theories of int ervention (Prochaska, Redding, & Evers, 2008) Key to the model is the stage construct represented in a temporal dimension that implies phenomena change over time. The change aspect was largely ignored by earlier theories that construe change as an event such as quitting smoking process orientation involving progression through a series of stages. The specific stages in the model are: precontemplation, contemplation, preparation, action, maint enance, and termination (Prochaska, Redding, & Evers, 2008) Besides the specific stages of change, the transtheoretical model employs processes of change that serve to aid progression through the six stages. These processes en tail covert and overt activities such as consciousness raising, self evaluation, helping relationships, and s ocial liberation, among others. The transtheoretical model also incorporates two other constructs decisional balance and self efficacy that may have applications in the proposed theory of meanings of fibromyalgia Decisional balance change The women interviewed for this study often spoke of the need to measure their daily activities to ensure they would have enough energy not only to get them through a day but also to sustain them through a week. This sometimes meant the women would be forced to turn down an invitation to go out with friends one day in favor of having energy for anoth er event such as a family celebration later on Some of the women also spoke about the need to spread out household chores over the course of a week to ensure they would have enough energy to get through their day s Decisional balance
158 also is illustrated i pros and cons of potenti al side effects against quality of life issues Self efficacy, which was i (1994) social cognitive theor y, signifies the confidence individuals have in their abilities to cope (Prochaska, Redding, & Evers, 2008) When applied in this study, self efficacy encompasses the coping strategies that the women interviewed employed in dea ling with their illness. For example, some of the women made use of to do lists that offered a sense of accomplishments as completed tasks were marked off the lists. Self efficacy also is inherent in the very subjective nature of illness that leads some pe ople to seek out medical help sooner than others. Indeed, some of the women interviewed for this study waited years before consulting a physician about their symptoms and still others have chosen to self treat rather than have a doctor prescribe medication Similar to the transtheoretical model, this current study proposes time as a Time, as noted in Chapter 4 is both explicit in the 30 year review of magazine coverage of fibromyalgia a nd implicit in the interviews with women fibromyalgia sufferers. The media frames identified in this study largely reflect the evolving dialogues on fibromyalgia that have been taking place over the years in the medical and research communities For exampl e, early discussions centered on the unknown puzzle or mystery of fibromyalgia and gradually shifted to the known characteristics and treatments derived from more recent research findings. Alt hough not explicitly stated, t he women in this study who were di agnosed during the time when fibromyalgia was shrouded in much more mystery than today appeared to derive different meanings from their diagnose s than the women
159 who were diagnosed more recently. For example, the younger women in the study seemed angrier ab out their diagnosis and more anxious for their future than the older women who perhaps have had more time to come to terms with their illness. These differing experiences could point to various their illness. Furtherm ore, as Bury (2005) suggested, experiences of good health and ill health are contextual, influenced by birth and stage of life. The women interviewed for this iew. Specifically t he younger women who had been dealing with the ir fibromyalgia diagnose s for a shorter amount of time frequently came across in the interviews as more sad and frustrated than some of the older women who had been diagnosed for a longer pe riod of time And r linear series of (Leonard, 1994) the women in this study addressed a sense of loss in such phrases as in relating activities they once enjoyed and have since had to give up. Finally, t he other constructs in the transtheoretical model are also apparent in findings from this study. For example, t he processes of change specific ally, consciousness raising and social liberation are evident in the advocacy efforts of the women to raise awareness and promote understanding of fibromyalgia among others. Social Networks and Social Support The terms social networks and social support do not necessarily connote theories. However, the concepts do describe the structure, processes, and functions of social relationships. In this study the attributes of social support and family functioning represent extrinsic mediators in the relationshi p networks of women who have
160 fibromyalgia. The concepts are explored here in an effort to provide further rationale for Meanings of Fibromyalgia (Figure 5 2). Social relationships and their influence on health have been of interest to researchers for some time (Heaney & Israel, 2008) However, a review of social science and health literature show s the definitions of social networks and social support to be unclear. In an analysis of the linkage between social support theory and research, Hupcey (1998) stated: Social support is a multi faceted concept that has been difficult to conceptualize, define and measure. Althou gh th i s concept has been extensively studied, there is little agreement among theoreticians and researchers as to its theoretical and operational definitions. As a result, the concept remains fuzzy and almost anything that infers a social interaction may b e considered social support (p. 1231 ) With t hat said, several key terms have been used in studies on social relationships including s ocial integration to signify the existence of social ties and social network to refer to the w eb of relationships that s urround individuals (Berkman, Glass, Brissette, & Seeman, 2000) Inasmuch as social support is a key provision of social relationships, the term social network represents the linkages between people who may or may not provide s ocial support and who may serve functions other than providing support (Heaney & Israel, 2008) The term social capital has been used more recently to describe certain resources and norms that arise from social networks (Ferlander, 2007) Stemming from social networks are various functions to include social support, which has many meanings. Thoits (1995) refers to social support as a resource for (p. 64) Indeed, social networks and social support represented coping mechanisms for some of
161 the women interviewed for this study. Catherine, who has been able to keep a full time job, said she uses social networks to help herself and others like her feel better about their illness. She stated: If I just feel negative, because feeling negative just makes me feel more pain and feel worse, I try to get o n Twitter or on one of the Facebook people with fibromyalgia. (WA1 294) Effective social support most often comes from a similarly situated individual who is facing or has faced the same predicament or issue as the person in distress, although in a much calmer fashion (Thoits, 1986) For individuals with culturally devalued or marginalized identities people with fibromyalgia, for example social support may be difficult to obtain (Frable, 1993) Meredith, who is happy with the support system she has in place, expressed her concern for those less fortunate in this statement: upport. I just hold that so do without having someone that actually genuinely wanted to know everything I 375) Social networks have several structures encompassing both dyadic and whole characteristics (House, Umberson, & Landis, 1988; Israel, 1982) Dyadic characteri stics pertain to specific relationships between the focal individual and the other members in the network. These dyadic characteristics include reciprocity, meaning the extent to which support in a relationship is both given and received; intensity or stre ngth, typified by emotional closeness of the relationship as in family functioning ; formality, as suggested by the extent to which relationships exist within formal organizational or institutional structures; and complexity, whereby relationships may serv e many functions. Examples of whole network characteristics include homogeneity, or similarity
162 among network members; geographic dispersion, referring to how close network members live to the focal individual; and density, relating to the extent to which n etwork members know and interact with each other (Heaney & Israel, 2008) Finally, o ptimal match theory presents social support as a multi dimensional construct in which some forms of support are more effective or beneficial wh en matched with or linked to certain types of stressors or incidents (Cutrona & Russell, 1990) Health stressors such as chronic illnesses create a strong need for empathy and a deeper understanding of the fears, feelings, and family reactions associated with the illness. Cutrona and Russell (1990) suggest support from others can help achieve optimal adjustment to uncontrollable health stressors. Such support may not be available from strong t ie relationships, especially as this study suggests in the case of fibromyalgia, when the illness carries a high degree of social stigmatization Addison spoke to this point in this statement: A lot of the (Internet) sites even the medical sites where they have stories about depression being a big part of fibromyalgia, mainly due to the really understand or kind of give you a hard time or whatever? A lot of that stuff is so rel opying and pasting things on a W eb site and posting them to my Facebook page because I get so sick and tired of hearing other family members fuss about me never wanting to do anything or go anywhere. Tha be a part of the family, which is so not true. (FL3 198) Schiavo (2007) depth understanding of the needs, beliefs, taboos, attitudes, life style, and social norms of all (p. 6) The proposed Model of Mediated Pathways to Meanings of Fibromyalgia is a first step in answering this directive. This study, with its focus on an understudied group of women with fibromyalgia, provides new insight into how communication related to a controversial health issue can inform meaning making
163 processes of those most affected. The study also provides valuable implications for research and practice. These are discussed next. Implications for Research and Practice This phenomenological grounded theory description of how women fibromyalgia patients respond to the mediated question surrounding the existence of their illness provides insight in to how the media frames the controversy on the diagnosis and how the women find meaning in their experiences. As such, the study presents several implications for research and practice. Findings from this dissertation demonstrate a clear need for more rese arch on the relationship experiences of chronic illness sufferers An area of special concern in this study is communication between doctors and patients Fibromyalgia sufferers interviewed for this study consistently expressed their need to find physician s they could trust and who have their best interests in mind and understand and take into consideration the social contexts of their illness. However, d espite research showing good communication to be an essential element in the delivery of high quality he alth care (Cegala & Street Jr., 2010) the women interviewed for this study suggested the biomedical aspects of care rema in ed the primary focus of most physicians Additionally, this current study has illustrated that a chronic illness such as fibromyalgia can affect the individual as well as the relationships an individual has with family members and friends. While r esearch in other areas has shown culture to play a role in how individuals view chronic illness (Turner, 1996) the aspect of media coverage needs further exploration to gain a greater understanding of how cultural factors impact the family functioning and social networks of chronic illness sufferers
164 Another implication inherent in this study relates to the role of the media and scientists in disseminating health news. A number of criticisms have been leveled at health news coverage, with the chief complaint made by scientists who say that reporters sometimes oversell scientific findings and overlook ongoing, everyday concerns (du Pre, 2010) The overselling of scientific findings in this study is most evident in the magazine article headlines which often alluded to causal evidence or cures for fibromyalgia pa in. However, the news media are not wholly to blame for misleading health coverage. The long building and non time pegged nature of science events do es not lend itself well to the character of news, which is to focus on the unusual and the recent (Taubes, 1998) News reporters also are at a disadvantage in accurately covering science issues because of the provisional, or changing, nature of science A study done today may reach different conclusions than studies done yesterday, (Vardeman & Aldoory, 2008) Moreover, relatively few reporters are trained to interpret the medical terminology and statistical analyses that make science difficult to understand (Tanner, 2004) The complexities of and questions surrounding a fibromyalgia diagnosis certainly support the need for the media and scientists to work together to do a better job of staying true to the central purpose of health care service to patients In relation to practice, this (Kaplan, 2003, pp. 24 25) The stages of change concept is a lso worthy of more exploration inasmuch as a fibromyalgia diagnosis may represent a maturing process that encompasses different accomplishments over time. For example, most of the older women interviewed for this
165 study had been living with their diagnose s far longer than the younger women. As a consequence, these women have had more time to travel down the long road in search of answers and although the answers they have been given may be incomplete, they are able to move more easily toward acceptance. The younger women and more newly diagnosed have not had that time and, thus, have not yet matured through the process. This stages process also has implications for support networks, specifically to gain an understanding of whether spouses and caregivers go through the same maturity process as those who have the chronic illness. Limitations of the Study Although this study does shed light on the media framing of fibromyalgia and meaning making experiences of women with fibromyalgia, the exploration is not wit hout limitations. First, this study focused on media framing of fibromyalgia in magazines only. A n examination of other media such as specific health news W eb sites or science journals could be done to determine whether similarities exist in the framing of fibromyalgia. A second limitation pertains to the in depth interviews, which were conducted only with women living in the United States between the ages of 20 and 70 who had been given a diagnosis of fibromyalgia. Interviewing fibromyalgia patients in ot her countries would have added a multi cultural component to the study. Also, t he majority of the women interviewed were older in their 50s and 60s. Additional interviews with younger women could allow for greater insight on the experience of fibromyalgi a. Likewise, i ncluding men and caregivers in the study could have provided different perspective s to the study And while this study specifically centered on the patient, the physician outlook should not be dismissed in future studies.
166 A third potential li mitation stems from the short, four week time frame in which the interviews were conducted. Although the researcher is confident of having reached theoretical saturation before leaving the field, the possibility of contextual situations such as the release of new study findings during the data collection period could have influenced the responses given by the interviewees. Therefore, further data collection at a different time or a longer period in the field might have resulted in additional or different fi ndings. A fourth limitation relates to the researcher. Although every attempt was made to ensure personal biases did not affect theoretical sensitivity, a possibility exists that pre existing opinions the researcher may have about the topic under study cou ld have influenced results Thus, the researcher acknowledges the possibility that findings could have been affected or limited in some way. Lastly the propositions developed as part of this proposed theory are based on the evidence collected and would ne ed to be tested and refined. Most of these limitations point to opportunities for future research that would contribute to refining the results or gaining additional insights into the experience of fibromyalgia. Some possible avenues for future research ar e offered in the following subsection. Recommendations for Further Research Development of theory is only the initial stage in grounded theory research. Future research should focus on refining and testing the proposed theory. As suggested by the proposed model, three areas offer possible avenues for continuing research on the meanings of fibromyalgia: mass media, health communication, and public relations.
167 From a mass media perspective, r eplicating this study using a frame analysis of other sources such as articles published in medical journals or comments posted on social media W eb sites would be a first step in further development of a theory of meanings of fibromyalgia. In doing so, c omparisons noting both similarities and dissimilarities would be drawn between the findings of this current study and the findings of th e study of other media sources. Additionally, grounded theory methodology allows for collecting data through many methods and from many sources. Therefore, other methods of data collection for instance, observation or focus groups might allow for greater understanding and richer insights. This dissertation specifically examined the media framing of the controversial illness fibromyalgia from a patient perspective M ass media r esearch in th e longer term could broaden this narrow patient focus by comparing the results of this study with a study that examines the framing of the illness itself. Such an analysis would separate the framing of illness from the patient. Additionally, the frames fou analysis of magazine coverage of fibromyalgia could be classified as frequently occurring and applied to analyses of other controversial illnesses such as chronic fatigue syndrome, attention deficit disorder, or restless leg syndrome. Th e stages of change concept could be further explicated in future health communication research by employing focus groups with fibromyalgia patients and caregivers to identify stages of coping with chronic illness and possible mecha nisms to help patients move through the stages Similarly, future studies could explore the extent to which each of the intrinsic and extrinsic mediators identified in the proposed model of mediated pathways contribute to meanings of fibromyalgia. Thus far
168 the findings indicate some are supporting factor s most specifically, time, family functioning, and social support b ut future research could try to tap each of the mediators as key areas for improving public understanding of fibromyalgia. Future healt h communication research in this area also could employ qualitative, in depth interviews with physicians to gain insights into whether treating patients with fibromyalgia and other similarly questionable conditions carries a stigma within the medical profe ssion. The answer to this question also might serve to further explicate the From a public relations standpoint, dialogic the ory could be employed in future studies to gain a better unders tanding of organizational public relationships and the extent to which organizations engage in dialogue with their members and the participation given to publics in the decision making and issue framing processes. For example, the women interviewed in this study noted that the marketing of fibromyalgia drugs largely ignored side effects, leading to questions of truth in advertising. Here, an examination of drug company marketing could be done to determine salience of messages to target publics. S imilarly, an examination of insurance coverage could lead to improved benefits that include lower cost alternative treatments such as acupuncture that many fibromyalgia sufferers find more helpful than costly conventional medicine in relieving pain and oth er symptoms. This current study further suggests a particular need exists to examine the efficacy of social media Web sites to support patients with controversial illnesses such as fibromyalgia. For example, most of the women interviewed for this study ci ted negative impressions of the Facebook pages of fibromyalgia non profit organizations Based on
169 this finding, one question worthy of exploration is whether social media is truly changing The res ults of such a study may lead to development of better public organization relationship building tools. perspective only. Future research could take a multi cultural approach to the question by employing surveys with fibromyalgia sufferers from other countries to compare and contrast their experiences with those of patients in the United States. Finally, given the ever changing nature of fibromyalgia, future research should consid er the illness on a crisis disruption continuum and ultimately target interventions to better address self care and the issues surrounding diagnosis and treatment In sum, this dissertation is but an initial step in a fertile and understudied area of healt h communication: patient conceptualization of messages surrounding a controversial chronic illness. Future research could apply the theory proposed in this study or use existing mass media, health communication, and public relations theories to continue to build knowledge on how the framing of a health issue affects the experiences and relationships of those coping with the illness in question.
170 Figure 5 1. Examples of potential mediators of communication
171 Figure 5 2 Proposed Model of Mediated P athways to Meanings of Fibromyalgia
172 APPENDIX A MAGAZINE FRAMING ANA LYSIS OF FIBROMYALGI A CODEBOOK 1. Article no.: Enter the number of sample article. 2. Source of article: Write the name of the library or the database from which the sample article was retrie ved. Libraries: George Smathers Library at University of Florida, Health Sciences Library at University of Florida, public library. Databases: Academic Search Premier, Gale Power Search, LexisNexis Academic. 3. Format of article: Enter the format of the sampl e article, either pdf (portable document format) or html (text only, Word document). 4. Accompanying visuals (photos, graphics, illustrations): If the sample article for text o nly documents that reference a photo, graphic or illustration and include a description of the illustration or graphic or cutline with the photo. 5. Name of magazine: Write the name of the magazine in which the sample article appeared, even if the article may have originated in another source for example, a reprint from another publication. 6. Date of publication: Enter date item appeared in the magazine. For some articles, this may only include the month and year, designated as mm/yy. Other articles may includ e month, date and year, designated as mm/dd/yy. 7. Length of article (in words): Enter the number of words of sample article. If the word count is not given, count the number of words in five lines and divide the total by five. Multiply that number by the tot al number of lines in the item to calculate approximate length of the item in words.
173 8. Headline (title of article): Write the title or headline of the item. If the headline includes a subhead, kicker, or more than one line, write all of them. 9. Main topic of t he article: Identify the main topic (idea) of the article. This is the primary or main issue or event that the story concerns. If it is difficult to determine the main topic, for each potential main topic, count the number of paragraphs that deal with the topic identified. The topic with the most paragraphs devoted to it is the main topic. 10. Secondary topics: After identifying the main topic (idea), list any other topics that are important to the story but cannot be considered the main topic. 11. Encompassing fra mes (specific sentencing, wording, phrasing used): This is the identification of frames. Read the article carefully, examining paragraph by paragraph the presence or absence of key words and phrases, loaded words or phrases, and sources of information used in (and excluded from) the article, including headline, to decide how the story is framed. Examine direct quotations frame the quotation is intended to advance o r reinforce. Identify the framing techniques that are used to advance a particular frame for the story. These techniques may include key words, headlines, quotation marks, catch phrases, and figures of speech to present or maintain particular themes via ph rases or sentences. Other framing techniques include delegitimizing (using quotation marks for non speech) and focusing on deviance (calling another person a bad name or suggesting the person is uninformed). Specific questions to ask in determining frames include: How is fibromyalgia framed? Who is involved in the story? Are the
174 sources presented credible? What are the issues raised and how are they presented? 12. Background of author (medical professional, journalist, fibromyalgia patient, other): Provide a de scription of the author of the article, if one is given. For example, the author may be a rheumatologist, neurologist, or some other medical practitioner (indicate type, if possible). Or, the author may be a fibromyalgia patient or an advocate for fibromya lgia. Also, the article may have been written by a journalist or health writer (indicate type, if given). 13. Sources quoted (medical professionals, associations, studies, patients, caregivers): Examine the direct quotations included in the article to identify those the frame the quotation is intended to advance or reinforce. Also, d escribe the sources quoted in the article by listing titles or associations for example, rheum atologist, neurologist, patients, advocate, support group leader, association (name the association), or researcher. Here, also provide the names of associations, companies, research institutes, or universities cited in the article. 14. Emphasis of article (i. e., identification of symptoms, treatment): Describe the main emphasis (focus) of the article such as the identification of fibromyalgia 15. References to fibromyalgia debate: If the arti cle specifically mentions the addressed to include any sources quoted. If no mention of the fibromyalgia debate
175 16. Recommendations ment ioned in article (positive/negative, hope/discouragement): This refers to the tone of the article. Here, assess the article to determine its overall quality. For example, is it positive or negative, hopeful or discouraging? Write down the assessment and pr ovide descriptive examples. 17. Impact of article on patient (i.e., economic, quality of life): How might the fibromyalgia? For example, does the article suggest ways to improve qua lity of life or costly treatments, or does the article reinforce or negate perceptions of fibromyalgia as a medical or mental condition worthy of notice?
1 76 APPENDIX B MAGAZINE FRAMING ANALYSIS OF FIBROMYA LGIA CODING WORK SHEET 1. Article no. : _______ 2. Source o f article (name of library or electronic database) : _____________ ____ 3. Format of article (pdf or html): ______________________ 4. Accompanying visuals (photos, graphics, illustrations)? ___ __ Yes __ ___ No 5. Name of magazine: _____________________________________ _______ _____ 6. Date of publication: ____________________________________________ _____ 7. Length of article (in words): ______________________________________ ____ 8. Headline (title of article): ________________________________________ _____ 9. Main topic of the articl e: ________________________________________ _____ 10. Secondary topics: _____________________________________________ _____ 11. Encompassing frames (specific sentencing, wording, phrasing used): ______ ________________________________________________________________ _______ ____________________________ _______________________________ _____ _________________________________ ____________________________ 12. Background of author (medical professional, journalist, fibromyalgia patient, other): _________________________________ ___________________________ __________________________________________________________________ __________________________________________________________________ 13. S ource s quoted (medical professionals, associations, studies, patients, caregivers) : _________ ____________________________________ __________ __________________________________________________________________ 14. Emphasis of article (i.e., identification of symptoms, treatment): _______________
177 ___________________________________________________________ _______ __________________________________________________________________ 15. References to fibromyalgia debate? _____ No _____ Yes (if yes, briefly describe) __________________________________________________________ ______________________________________ ___ _________________________ __________________________________________________________________ 16. Recommendations mentioned in article (positive, negative / hope discouragement): ____________ __________________________________ ____ ______________________________ ____________________________________ __________________________________________________________________ 17. Impact of article on patient (i.e., economic, quality of life): ________________ ______________________________________ ____________________________ ____ ______________________________________________________________ __________________________________________________________________
178 APPENDIX C INTERVIEW GUIDE Introduction: Self introduction, name and general affiliation; voluntary participation, verbal a cknowledgment only (no signature on consent form to ensure privacy). Purpose of interview I am broadly interested in the current and historical media conversations related to fibromyalgia and its status as a condition. In particular, I am interested in th e treatment of women with fibromyalgia by their peers, families, friends and medical professionals. Interview begins Grand tour question: What is your experience with fibromyalgia? Diagnosis of fibromyalgia: How would you describe what fibromyalgia is to someone who did not know about it? How long have you been diagnosed with fibromyalgia? Sources of fibromyalgia information : When did you first learn about fibromyalgia? Where do you get your information on fibromyalgia now? What are your fibromyalgi a information sources? What are your perceptions of the information you have been given/found on fibromyalgia? Fibromyalgia treatments: Have you ever sought treatments other than doctor p rescribed?
179 How are you dealing with your fibromyalgia? Personal experience with fibromyalgia : H ow would you describe your experience with fibromy algia? Can you describe a typical day of living with fibromyalgia? When you think of fibromyalgia, what do you see/image? Do you have a mental image of fibromyalgia? Relationships : Can you tell me about a time when you told someone you had fibro myalgia? What reactions have you gotten when people learn you have fibromyalgia? examples reactions (statements)? What is your relationship like with your doctor? recent visit to your doctor? What are your personal relationships like with family ? your family relationships? family plans because of fibromyalgia? e reactions of your family to such changes? What are your personal relationships like with close friends? your friendships ? fibromya lgia? How do your friends react to cancellations of planned get togethers ?
180 APPENDIX D INFORMED CONSENT Protocol Title: Relationship Experiences of Women Living With Fibromyalgia Please read this consent document carefully before you decide to p articipate in this study. Purpose of the research study: The purpose of this study is to describe the experiences of women diagnosed with fibromyalgia. What you will be asked to do in the study: You will be asked a number of questions related to your experiences with fibromyalgia and your relationships with doctors, friends, family, peers, and co workers. You may consider some questions personal. I am interested in your experiences, observations, and opinions. No right or wrong answers exist. You m ay refuse to answer any questions. Time required: Approximately 1 hour Risks and Benefits: While no foreseeable risks are associated with this study, you may experience discomfort answering some questions. No direct benefits are likely to come from participating in this study. However, you may benefit indirectly through an increased understanding of challenges faced by women with fibromyalgia. Compensation: No compensation will be given for your participation in this study. Confidentiality: Y our identity will be kept confidential to the extent provided by law. All tapes will be coded without identifying information. Tapes will be kept in a locked cabinet in the If any presentation and/or publication results from this research, you will not be identified by name, and every effort will be made to eliminate any potentially identifying content from directly quoted and/or paraphrased responses cited in any publicati on or presentation. To further ensure your privacy, you will not be asked to sign a consent form.
181 Voluntary participation: Your participation in this study is voluntary. There is no penalty for not participating. Right to withdraw from the study: You have the right to withdraw from the study at any time without consequence. Whom to contact if you have questions about the study: Joy L. Rodgers, Graduate Student, College of Journalism and Communications, Weimer Hall 2000, phone 682 8495. Debbi e Treise, Ph.D. College of Journalism and Communications, 2000 Weimer Hall, 392 6557 Whom to contact about your rights as a research participant in the study: IRB02 Office, Box 112250, University of Florida, Gainesville, FL 32611 2250; phone 392 0433. Acknowledg e ment of participation: By agreeing to be interviewed at this time, you are acknowledging your participation in this study. No signature of consent is being requested to ensure your privacy.
182 APPENDIX E EMAIL TO FIBROMYALGIA SUPP ORT GROUP LEADERS Dear ( full name of support group leader) : My name is Joy Rodgers and I am a doctoral candidate in the College of Journalism and Communications at the University of Florida currently working on my dissertation broadly related to ization s of messages about their primary health concern of fibromyalgia. I would like to invite members of your support group to participate in this research study, G iven the focus of the media and the dispute in the medical community over is the patient in this debate? To answer this question, I need women fibromyalgia patients betwee n the ages of 20 and 70 and living in the United States willing to take part in a 60 to 75 minute phone or personal interview Participation by these women is vital to the success of my study, so I do hope you will help me out by agree ing to provide my na me and contact information along with the attached informational flier about the study to eligible members of your support group. Your thoughtful consideration of this request is greatly appreciated. I will be happy to answer any questions you have about my project or the aim of my study. You may reach by email at email@example.com or by cellphone at 000 000 0000. Sincerely, Joy Lynn Rodgers, CHES Ph.D. Candidate College of Journalism and Communications University o f Florida, Gainesville Attachments (2) : Recruitment flier Informed consent
183 APPENDIX F STUDY PARTICIPANT RE CRUITMENT FLIER Volunteers Needed for Doctoral Research Study on Fibromyalgia Experiences Women with fibromyalgia are being sought to take part i n 60 to 75 minute interviews as part of a doctoral dissertation research project on conceptualizations of health related messages. If you are a woman between the ages of 20 and 70 have been diagnosed with fibromyalgia, and live in the United States, ple ase consider volunteering for this study which aims in part to describe the experiences of women living with fibromyalgia. The study is strictly confidential, and the identities of all who participate will be protected. This study has University of Flori da Institutional Review Board (IRB ) approval For questions about the study or to volunteer, please contact the researcher: Joy Lynn Rodgers, CHES Ph.D. Candidate College of Journalism and Communications University of Florida, Gainesville Email: firstname.lastname@example.org Cellphone: 000 000 0000
184 APPENDIX G SAMPLE INTERVIEW TRA NSCRIPT Date/Time of Interview: June 2, 2012 / 11 a.m. EST Location: Phone Length: 1:14:42 Before tape began, introductions were made and acceptanc e to be taped was reconfirmed. TRANSCRIPT BEGINS: along. The first question that I have is, What is your experience with fibromyalgia?) Well, the overall experience besides be exhausting, as well as emotionally. I had been suffering for years before any diagnosis So that alone was just a horrible exp erience of my life. Then going through the process then more tests and work ups and nothing coming back and me still feeling horrible process. You feel hopeless. And then when you do to turn to doctors for support, but been suffering from and then there is no support. No one really seems to understand or want to understand. And then doctors are just so quick to give you a prescription pad of the next latest or grea test drug, and you just feel like anyone else that there could be something more than a magic pill or an answer. And no one seems to want to take you seriously, or try to work with you to try to better your life or manage your pain in a healthy or more nat ural way. were given a medical examination?) second opinions [chuckles] nued to go to additional rheumatologist,
185 internists. I had gone to GI doctors, allergy and immunology doctors, everyone on the list. ( A ll right, who are you seeing now?) In circulation, I have my rheumatologist, and my PCP [primary care physician], who al so seconds the diagnosis. I also have my licensed mental health, just my counselor, and on to p of that, I have my GI [gastro intestinal] doctor, who is also in the regular spectrum. I see my gynecologist as well. Being diagnosed with fibromyalgia, realized that all the other symptoms that I suffered from my whole life all kind of entered r. Oh, PCP, primary care physician. (Oh, PCP, primary care physician, [both laugh] So, you actually have a number of doctors. Do they all coordinate and talk with each other to manage your care, or how does that work?) Actually what it is, which is great in a way, their network is all linked by the Internet send each other notes about follow ups or resu doctors so they can see what tests have been run o located within a fair distance of each other, but they all correspond. And the other thing I do when I leave a visit is I try to ask for the notes that the doctor has taken and I keep for my own records. I do that just so I can keep in the loop bec pertaining to and really wanted them to know that they hear you and that they can try to every day. So, I always try to get the records and have those in place for when I see another doctor.
186 You never know. You have to be your own advocate, especially with this (H ow long did it take you then to receive or hear the word fibromyalgia?) Uh, the funniest part was that, you know, I had been going and going to the doctor and I had bee n suffering for years from all these isolated or what I thought were isolated symptoms, you know, dysmenor r hea painful cramps, IBS, headaches, dizziness getting diagnosed in bits like it, but no one ever told me that. Probably it took about close to a year of going, which is probably quicker than most get. But I had a really great group of doctors. I did have some who were going with the thought it was in your head. And then I found this rheumatologist and PCP that were excellent. But it was a Um, so, why are you having all these other issues and symptoms? But, looking back, even in my childhood, I suffered from a lot of what reflect in fibro and I never had any answers. I thought it was normal to be in pain. I always thought it was normal to have issues with my cramps, or going to the bathroom, or headaches, dizziness, or chemical sensitivities. I just thought it was normal and everybody kind of hurt like that. (You said it was about a year, so you are fairly recently diagnosed?) (So, two year ot all the symptoms, second, third and fourth opinions all confirmed.
187 ( Y ou did at some point get the tender point examination?) Yes, that was initial. My PCP, immediately after all my other work ups came out, she referred me to the rheumatologist and one of the first things he did was the tender points exam, as well as my joint m obilities and everything like that. (From there, it was to rule out other things?) Right, previously my PCP had ordered all the tests for Lyme (disease) and for rheumatoid fractures, arthritis. They ran the work ups and everything came back negative. My D3 my regime is Vitamin D3. you Yeah, right, no I had never heard of it. In the beginning, probably, you know, a little over two years ago, sadly enough, I began Googling my symptoms because no one had any answers. You know, why would I suddenly get a fever, or if I had a glass or two of wine, why I would feel so ill, and certain foods like that, so I would start Googling it and the word fibromyalgia came up. And I had never heard of it you know, ever. And so you know else. And then when I went to the doctor and they said it, at least at that point I had done my own kind of research whether it was legitimate or not so I had heard of it a t somnia and that was that. So I had no idea what it was before that. (Essentially you were resourceful, you went to the Internet and you brought that to your doctor. So where are you getting your information now? What do you consider your fibromyalgia infor mation?) Right now I have a rheumatologist reading. The library is my best friend [ chuckle]. I get a lot of books in regard to chronic pain or along those lines by distinguished doctors. I also belong to a few national
188 fibromyalgia society groups that are local here, support groups, as well as the national foundation. I go to lectures to try to learn anything I can about this, and the Internet. Of support group where we can ask each other questions or kind of have that outlet from symptoms or [bounce] questions off each other. From reading or Int your own research, which is not necessarily a good thing. (Based on your resourcefulness and the information all in your head. But then when you read factual books by doctors doing research for 20 plus years on this, it also gives you some comfort in the fact that your symptoms are in. there are so many symptoms that are another flare it goes from one spectrum to the other. That people o say to them, here, go on the Internet and look it up because
189 there for resources. accurate and inaccurate information?) Yes, especially just on message boards or places where people can have the say or attack people suffering from fibromyalgia. (The people who are on these message boards, are these people with ay of characters that come into play there, but I do avoid that. But, those are the things that scare me when family or a friend who wants to further their education see when they try t judging me on a misconception because someone has the freedom on the Inte rnet to say whatever they want. (Right, right. So, these particular message boards, do you know if they are profit group, but the people on there still have free will to say what they want or post what they want. So, at the same, I joined in hopes of support and finding local people, especially meeting, you know 29 or whatever healthy person, quote/unquote [ it be from the suff erer or from people with opinions who have no idea what we deal with.
190 up ended up crawling ou based on what I see people who have it act like. (T he information on the Web from the sponsored grou p, when someone posts what would be a negative or misinformation, is there anyone who from the organization comes back and tries to dispel a particular misinformation or myth?) teered clear of that since the beginning. Especially in the beginning, you are so vulnerable and you have no answers, but I have not seen anyone be like a referee or someone trying to right the wrongs at all. I do get emails directly from them now instead of having other on and this information is tainting my outlook. (When you go to the meet ups, the supp ort groups in person, and you say you see/witness the way people are living their lives and you said it makes your skin crawl sometimes, the leaders of the groups, are these professionals medical professionals who help or are these groups led by someone who has fibromyalgia trained in providing support in a group?) professionals. They have doctors that come in and other people in the medical professions. They are more of an organ ized group. They do topics. They typically focus it along medically proven or documented facts and documents and the discussion is inaudible
191 right to feel like I feel and floor to speak or to socialize. something, it in the basement of her home. And from both spectrums, even t hat one, the numbers are so far and few between it. The locations of either of the ed are both. As I said, the medical professionals and someone that hope and I fe can really take a toll on you. ut r self?) Initially, it started with just muscle relaxers Flexeril and some physical therapy, trying to do hydrotherapy or basic parts of my body that were losing strength and having spasms. The muscle relaxers there, I also was prescribed mild anti depressants, such as Gabapentin or amitriptyline, anti seizure medications, they tried me on. They give you steroids. They tried cortisones and things like th the anti inflammatories, but heavy duty ones. They all have repercussions. And the n idocaine, which is they hook you up for a few ho urs and they flush you full of thing, it causes a worse flare. udies to use spinal taps and sleep studies, but they tried just pushing the pills the anti
192 seizure medication that causes suicidal thoughts when you are taking something that people who are having seizures take, or and nothing helps. me drugs, maybe not paying attention to my allergies or have caus ed me some severe those prescribed by your doctors?) chi. I do yoga when I can inaudible )], which is like an energy inaudible holistic. My vitamins, my supplements, my breathing exercises, my stretching, my mild exercise when I can the walking and just trying to do the things that I do, enjoy and make me happy. (In dealing with your fibromyalgia now, it sounds like you are trying to manage it by doing a lot of non prescription stuff the exercise, the yoga, the Reiki, as you say?) ion and I was a willing participant with anything they could think that would help me, and it would end up making me worse, or even pain had allergic reactions to the t comfortable with taking and wit get out of bed, I do with 800 ibuprofen, but those again, with my IBS, they eat up my be able to deal with getting out of bed most days and trying to do it more natural and holistic and just keep moving. They say the main thing with this is just to focus o n eating and being healthy and stress reduction and everything
193 at your own personal experien ce. In describing your own experiences with fibromyalgia, what feelings come to mind when you think of fibromyalgia?) Um, just like lost, overwhelmed, pain, really, it is overwhelming T scouraging. You feel that sometimes hypochondriac, so to feel these things and be that in tune with myself, I trust myself. But for someone to basically tell me that in so man what the heck have I done to be treated this way, or what did I do to deserve this? You think about it every time you try to reach for something or try to move and it hurts. with that in mind, how does this affect your daily life?) used to have healthy frie ndships. My relationships used to be more intimate, and now overwhelmed or anxie ty because if someone hits me the wrong way, I hurt so bad from hat I was ever, you know, crazy party er or anyone who goes out or goes to one little thing is going to flare me up for a week or if they have the smoke come out of t ing to get sick and throw up.
194 very quickly. That was probably one of the best things from this whole experience was and now I let things go a little bit more. Um, I say, OK, I have this, this, and this, and I have all day to do it. I decision over a year ago, and so every day, I give myself my to do list, but nothing is really hard. (O K, one of my questions was how does fibromyalgia affect your personal relationships, so Right, yeah, well, the ones who truly did want to understand what I deal with and excuses. I was really seriously sick. Um, and they would s tart getting frustrated or but it was
195 social, outgoing pe (Y ou briefly hinted at this earlier, but I was hoping you could tell me about a typical e of your coping mechanisms you talked about having a to do list and not getting it done as quickly as you might have in the past, so what are some other things?) Yeah, I make the to mentally, I for get the most minuscule things that you would take for granted, so lists are little chores; I schedule out my week. I have a calendar and I put things that are upcoming to look forwa s me positive. Around the house, like I said, I pace myself. I do little things. I still try to bake or cook when I can. My clea ning routine is about the same. I try to get out and walk about up, I y, s to be had throughout the day. multi of hours if I do and I am just so exhausted. I may sit in my car in a parking lot and I say, how am I supposed to get home? I have no strength and all I did was go to Wal Mart and do (What is your perspective, your outlook for the future?)
196 made so many accommodations with it and as I said, the support that I have hope ful in the sense of my outlook. really great article from a renown ed doctor, would you l stop, constant wake up one day and feel great again. I live my life but I treat my body great. I work on ke up one day and be able to do everything I did people can beat this, I guess I would be a little bit more optimistic about the actual fibromyalgia diagnosis. (Do you have a mental image that comes to mind, or how do you picture fibromyalgia?) [ L y come out with a pill like that or someone takes a pill like that, the amount of side effects that are from that alone are going to put you right back where you were more than likely at least in my experience. Um, when I hear fibromyalgia, I bon people who still go out and work every day and do look healthy and fine. And then you see people limping around in canes and can barely ge t up the stairs.
197 it can look like anybody you or me t feel well, or being hunched over. But at the same, the drug [ inaudible companies?) Absolutely. y not take the surveys and b to fight and take care of your family and your life and yourself and all you see are healthy, happy people, but you per se, but they still need to maybe do a little b it more research and really relate to people. already. Can you tell me about a time when you told someone you had fibromyalgia?) I can go with g T and we have an answer
198 n with you and be your board at home just wanted to know what is wrong with me. So having that support is great and coming home and saying, OK, this is what I have, what do we have to do, and being asked, what can I do to make your life easier to not push yourself. I t hought that was amazing. you depressed, is that what it is? We have depression in our or the lack of education about it ng I do is try to ask them questions and hear their own opinion and do my own research instead of assuming, or you know, kind of not acknowledging t heir feelings or the situation. more negative than positive, to say the least had a lot of friendships that have dwindled or become extinct due to the fact that people a lot for inaudible (Can you give me some examples of what people actually say besides y our mom?)
199 nge phenomenon when you say it. they were doctors they came up to me and they asked, e really asks, they just automatically try to find (How much time does your doctor spend with you?) I have many doctors. None of them are really willing to sit down forever. My rheumatologist found one that I would recomm groups, you meet other people and they say would you recommend a great rheumatologist, someone who would work with me
200 The most recent doctor I went to was a rheumatologist. I waited for about 40 up, or anything, so you would assume being with a new doct or, you would want to get to a j ohnny and pass your evaluation type th office, you would think th ere would be some sort of sense by people dealing with these me and helped me get up on the paperwork that comfort or consider ation. He does a quick inspection of the trigger points; he does my me and one little bit can cause my whole arm to flare up for a week, but no she does my right arm there.
201 a good thing, even the mos t recent one ing to me. And, you else to tell you. had a bad reaction. I ended up in the ER due to t he anti seizure medication that he put me on. So, then he tries me on another one, but it can cause stomach disease and then fight with my insurance to try to get me help, so now I have no medication I can take or another one that I can hopefully find that will. The whole visit lasted probably about 15 minutes. I got a little pamphlet and wrong with my knees, they pop and crack, my hip pops out of place and I have these ing in the world because by the time I get in the car, I just want to cry. When am I going to meet a doctor that actually cares or wants to have a see that if I walke d in screaming or crying about all these issues or ask for painkillers, or do you keep going and plan on getting beat down?
202 repared, come with a list of your reactions and 15 minutes into the questions, I go, list. He threw it in the trash in front of me on like, am I not supposed to get upset? make considered or labeled like that. And only one doctor has ever said, you should talk to a counselor and that was an orthopedic surgeon after a crazy month of MRIs and injuries on my right arm, which is still unable to be used, who passed me off. These are h (What about your other family relationships brother or sister, perhaps?) lung cancer
203 other family support. My life i s the house with doing things. What would I do? (Have any of your doctors asked you about your support system, about your family, about what kind of help you have at home outside your counselor, maybe?) a and b should be getting out and doing things. They have no resources. They say, oh, get a support group. Have you Googled close and think about this illness or however you want to describe it as fibromyalgia away and believe me, when it was over, even just sitting there for a couple of hours, I ave someone come pick me up and come get my car the next day because I was so tired and I had such a bad reaction to the candles drive home. You know I was so exhausted So, I mean, there are no resources when they say go talk to a support group or do or do you think you need to talk to some income right now and your health that you should talk to someone or tell me if you feel that way? Well, the anxiety is rising bec ause every doctor I see brushes me off or
204 never once woke up crying or questioned ow act those. So anywhere. (Do you have anything to add, or are there any questions that you wish I had this not to take it away from anything else that people do suffer from. I wish that we could just kind of let everyone know in ea sy to read, universal kind of pamphlet and let that. I really wish there was mor e of a real, palpable outlet for people suffering and for
205 through family and friends to understand. I keep tugging away at doing any kind of advocacy and outreach. awarene ss and support for local college radio stations and things with my group. fibromyalgia awareness month I can educate people and give out pamphlets that are actually fro m the foundation that has facts backed up and not just something printed off the Internet. I just wish there was more of the support and more of an outreach to becom e something that people can actually read in their homes and have a little bit of an optimistic outlook on it. (Thank you and wrap up.)
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221 BIOGRAPHICAL SKETCH and health education and behavior from the University of Florida. She also holds ee is in sociology and journalism from the University of Arizona. public relations, social marketing, and social media. Her teaching areas are varied, reflecting both her profe ssional background as a former newspaper reporter and editor and public relations practitioner, as well as her academic experiences in business, health education, public relations, and mass communication. As a graduate student at the University of Florida, Joy has taught a number of writing courses from reporting and public relations writing to professional business writing. She also has assisted with large foundational classes in public relations and journalism. areas from corporate reputation to health advocacy. She also is interested in social marketing and the use of emerging technologies in health communication.