<%BANNER%>

UFIR



Internet Use and e-Health Literacy of Low-Income Parents Whose Children Have Special Health Care Needs
http://www.jmir.org/ ( Publisher's URL )
CITATION PDF VIEWER
Full Citation
STANDARD VIEW MARC VIEW
Permanent Link: http://ufdc.ufl.edu/IR00001309/00001
 Material Information
Title: Internet Use and e-Health Literacy of Low-Income Parents Whose Children Have Special Health Care Needs
Series Title: Knapp, C., V. Madden, H. Wang, P. Sloyer, and E. Shenkman. (2011) “Internet Use and e-Health Literacy of Low-Income Parents Whose Children Have Special Health Care Needs.” Journal of Medical Internet Research, 29;13(3):e75.
Physical Description: Journal Article
Creator: Knapp, Caprice
Madden, Vanessa
Wang, Hua
Sloyer, Phyllis
Shenkman, Elizabeth
Publisher: Journal of Medical Internet Research
Place of Publication: Journal of Medical Internet Research
Publication Date: 2011
 Subjects
Subjects / Keywords: children with special health care needs
internet
Medicaid
information seeking
Genre:
Spatial Coverage:
 Notes
Abstract: Background: The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated by having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs (CSHCN) who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. Objectives: For parents of CSHCN we sought to 1) describe their Internet access and use, 2) determine which child and household factors were associated with Internet use, 3) describe e-health literacy of Internet-users, and 4) determine which child and household factors were associated with greater e-health literacy. Methods: Cross sectional, telephone survey of 2,371 parents whose CSHCN are enrolled in Florida’s Medicaid and SCHIP programs. The eHEALS scale was used to measure e-health literacy. Descriptive and multivariate analyses were conducted to address the study objectives. Results: Parents were mainly female (91%), White non-Hispanic (39%), speaks English (77%), high school graduates (31%), not married (53%), and lived in a two-parent household (52%). Eighty-two percent of parents (1,948 out of 2,371) in the sample report that they use the Internet and 49% of those parents use it daily (1,158 out of 2,371). Almost three-quarters of Internet users have access to the Internet at home while about one-half have access at work. Parents who are African American, non-English speaking, older, and are not college graduates were less likely to use the Internet than their referent groups (P<.001). About 75% of Internet users (1,476 out of 1,948) report that they know how to use the Internet to find health information for their child. However, only about one-half (974 out of 1,948) report that they can tell high quality from low quality resources online or that they feel confident in using information online to make health decisions. Multivariate regression results consistently show that non-English speakers, having less than a high school education, and being older are all significantly associated with lower e-health literacy. Conclusions: Low-income parents of CSHCN have access to and use the Internet as a source of information about their children's health. However, disparities in their Internet use and e-health literacy were identified. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.
Acquisition: Collected for University of Florida's Institutional Repository by the UFIR Self-Submittal tool. Submitted by Caprice Knapp.
Funding: This work was funded by contract COQQA between the University of Florida and the Florida Children’s Medical Services Network Division (Shenkman and Knapp Co-PIs).
 Record Information
Source Institution: University of Florida Institutional Repository
Holding Location: University of Florida
Rights Management: All rights reserved by the submitter.
System ID: IR00001309:00001

Downloads

This item is only available as the following downloads:

Final_JMIR_Paper_pdf


Full Text

PAGE 1

1 Internet Use and e Health Literacy of Low Income Parents Whose Children Have Special Health Care Needs Caprice Knapp*[1], PhD, Vanessa Madden [1], BSc, Hua Wang[1], MS, Phyllis Sloyer [2], PhD, Elizabeth Shenkman[1], PhD [1] University of Florida, Depart ment of Health Outcomes and Policy, College of Medicine, Gainesville, Florida. Florida *Correspondence to: 1329 SW 16 th Street, Room 5130, Gainesville, Florida 32610, (T ) 352 265 0111 ext. 86087, (F) 352 265 7221, cak@ichp.ufl.edu Body Word Count: 3 982 Abstract Word Count: 410 Tables: 5

PAGE 2

2 ABSTRACT Background : The Internet has revolutionized the way in which many American s search f or health care information. Unfortunately, being able to use the Internet for this purpose is predicated by having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of c hildren with special health care needs (CSHCN) who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. Objectives: For parents of CSHCN we sought to 1) describe t heir Internet access and use, 2) determine which child and household factors were associated with Internet use, 3) describe e health literacy of Internet users, and 4) determine which child and household factors were associated with greater e health litera cy. Methods: Cross sectional, telephone survey of 2,371 parents whose CSHCN are used to measure e health literacy. Descriptive and multivariate analyses were conducted to address t he study objectives. Results: P arents w ere mainly female (91%) White non Hispanic (39%) speaks English (77%) high school graduates (31%) not married (53%) and lived in a two parent household (52%) Eighty two percent of parents (1,948 out of 2,371) in the sample report that they use the Internet and 49% of those parents use it daily (1,158 out of 2,371) Almost three quarters of Internet users have access to the Internet at home while about one half have access at work. Parents who are African Amer ican, non English speaking, older, and are not college graduates were less likely to use the Internet than their referent groups ( P <. 0 01). About 75% of Internet users (1,476 out of 1,948) report that they know how to use the Internet to find health info rmation for their child. However, only about one half (974 out of 1,948) report that they can tell high quality from low quality resources online or that they feel confident in using information online to make health decisions. Multivariate regression re sults consistently show that non English speakers, having less than a high school education, and being older are all significantly associated with lower e health literacy. Conclusions: Low income parents of CSHCN have access to and use the Internet as a source of information about their children's health. However, disparities in their Internet use and e health literacy were identified. This information is timely because as the pressure to use the Internet to empower consumers and exchange information inc reases, issues related to access and disparities must be better understood.

PAGE 3

3 Key words: children with special health care needs, internet, Medicaid, information seeking

PAGE 4

4 INTRODUCTION There is no doubt that the World Wide W eb has significantly impacted the world since the mid 1990s. Information that was once available to only those with time, money, and knowledge is now available at the click of a button to those who have access to the Internet Pew Internet and American Life Proj ect is perhaps the most comprehensive series of research on how access to, and use of, the Internet has evolved since the early 2000s. The Findings from the report noted that about 26 million American had used the Internet to keep in touch with a relative that they previously had not [1] More recent studies have contemplated differential between those who access the Internet and tho se who do not [2] Th e divide has been documented in the United States as well other European countries [3,4] divide is narrowing over time as the number mobile devices increase s and the broad band population becomes more diverse, especially within the African American community [5] Lorence however suggest s that the divide persists with the emergence of a group [6,7] Likewise, the impact of the World Wide Web on heal th care has also been radical. Consumers have flocked to the Internet to search for information on 2008 nationally representative telephone survey suggest that 61% of Americans u se th e Internet to find health information and 60% say that information they found online has impacted a health care decision they made [8] These results have been corroborated by peer reviewed studies. McInnes et al (2010) found that 29% of veterans ha d searched for health information online [9] Health information searching was directly associated with higher levels of education, living in an urban area, and decreased health status. Lea and colleages (2005) studie d patients with head and neck cancer who received care at a comprehensive cancer center [10] Using the computer was associated with increased educational attainment and income, but younger age. Walsh conducted a survey with 1784 cancer patients and also found that use of the computer incre ased with education and income, but decreased with age [11] Although no information exists in the literature, u sing the Internet to find information on health may be especially useful for the approximately 13.9% of parents in the United States whos e children have special health care needs (CSHCN) [12] CSHCN face a number of medical decisions throughout their lives, forcing their parents to routinel y seek out and compile large amounts of medical information on their behalf A paucity of informatio n does exist in the experiences with the Internet. Mackert et al (2009) conducted focus groups with low literate and culturally diverse parents and found that some avoided .edu or .gov websites because they are viewed as too complex and that some parents expressed a lack of trust in government websites [13] Kind et al. (2005) surveyed 260 African American parents and found that

PAGE 5

5 greater Internet use and access were associated with higher educational attainment and income [14] Othe information seeking activities related to specific diagnoses including genetic counseling hearing loss, and late effects of cancer treatment [15 17] Finally, it is clear that just having access to the Internet to search for health information for parents of CSHCN is not adequate. Parent s can locate massive amounts of information, but they may not know how to process it, or what of that information they can rest their confidence in A greater understanding is needed of these parents e information gleaned from electronic platforms [18] To our knowledge, no studies have sought to describe Internet use and e health literacy of parent s of CSHCN Our study addresses these gaps in knowledge. We aim to 1) describe Internet access and use patterns among low income parents whose children have special health care needs, 2) describe the factors associated with Internet use, 3) describe the e health literacy of the parental Internet users, and 4 ) determine which factors are associated with greater e health literacy. We hypothesize that there will be education and age disparities associated with Internet use and e health literacy. METHODS Sample Study participants were parents of CSHCN aged one to 21 years that providers and each child enrolled in CMSN is assigned a care coordinator. All Health Insurance Plan (SCHIP) and their families have incomes < 200% of the federal poverty level. Children must be cert ified by a physician as having a SHCN. A random sample of parents whose children were currently enrolled in CMSN was sent a letter explaining that someone may call them to participate in the study. Telephone surveys were conducted in English and Spanish between July and October 2009 using the Windows Based Computer Assisted Telephone Interviewing System. Overall, 2,371 surveys were completed (response rate study. Outcome Me asures the Internet, as well as the e health literacy of Internet users. We asked parents if they ever used the Internet, and if they had used the Internet, their frequency of use ( daily, weekly, less often than weekly). Parents were asked where they accessed the Internet (work, home, or mobile device). To determine the e health

PAGE 6

6 literacy of Internet users, the eHEALS scale was used. The eHEALS scale measures the evaluate, integrate, and apply information gained [18] There are eight items on the eHEALS scale that categories determine the level of agreement (agr ee, undecided, disagree) with the eight statements about online health information. Psychometric testing on the eHEALS has revealed high internal consistency (alpha=0.88) [18] Factors The final study aims were to explore what parent, child, and hou sehold factors are associated with Internet use and greater e health literacy. Several paren Good, Go od, Fair, or Poor. Analyses Descriptive analyses were conducted to describe Internet use, how users accessed the Internet, and responses to the eight items from the eHEALS scale. Multivariate analyses were conducted to explore which child and househo ld factors are associated with Internet use and greater e health literacy. A multivariate logistic regression was conducted to determine factors associated with Internet use. In this regression the dependent variable was a binary indicator equal to one i f parents responded that they used the Internet, and zero otherwise. Finally, eight multivariate ordinal logistic regressions were performed using the responses to each of the eight statements in the eHEALS scale. Ordinal logistic was chosen because the response categories for each of the eight statements are ordinal (agree, undecided, disagree). STATA version 10.0 was used to perform the analyses [19] RESULTS Sample Characteristics More than one half (52%) of parents live in a two parent household, 47% were married, 77% primarily speak English, 39% are White non Hispanic, 31% had a high school diploma, and 91% of the respondents are female (Table 1 ). Twenty one percent of parents report that their children are in Fair or Poor health, Good (39%), and Excellent or Very Good health (40%). Parental mean age was 40.5 (standard deviation=10.2 years) and mean age of their children was 10.5 (standard deviation=4.9 years). Table 1. Summary Statistics Variable n % Parent's Gender Female 2,154 90.9%

PAGE 7

7 Male 217 9.2% Parent's Race/Ethnicity White non Hispanic 915 38.9% Hispanic 688 29.3% African American non Hispanic 326 26.5% Other 125 5.3% Parental Language Spoken at Home English 1,827 77.2% Non English 541 22.9% Paren t's Educational Attainment Less than High School 458 19.5% High School Graduate 721 30.8% Some College 569 24.3% College Graduate 597 25.5% Parent's Marital Status Non Married 1,096 53.3% Married 1,252 46.7% Type of Household Single Parent 1,127 48.2% Two Parent 1,212 51.8% Child's Health Excellent/very good 943 40.2% Good 914 38.9% Fair/poor 491 20.9% mean ( s.d.) Parent's Age (years) 40.49 (10.24) Child's Age (years) 10.54 (4.90) Inter net Use Overall, 82% of all parents (1,948 out of 2,371) ; use the Internet and 18% of parents report that they never use the Internet (Table 2 ). Of the Internet users, about one half access the Internet or e mail on a daily basis. Most parents accessed the Internet from home (71%), 49% accessed the Internet from work, and 43% of all parents have access to the Internet from both home and at work. About 26% of parents accessed the Internet from mobile devices. Table 2. Internet Use and Access Variable N % Use Frequency of Internet or Email

PAGE 8

8 Use Daily 1,158 48.9% Weekly 488 20.6% Less often than weekly 299 12.6% Never 423 17.9% Location Internet Access From Home 1,681 71.1% Internet Access From Work 1,143 49.4% Internet Acces s From Home and Work 1,015 42.8% Ever Used Cell Phone or Blackberry to Access Internet or Email Yes 624 26.3% No 1,745 73.7% Multivariate Analysis Internet Use A logistic regression was performed where the dependent variable was equal to on e to indicate Internet use, and zero otherwise (Table 3 ). African American race, non English speaking, older parents, and parents with less than a college education were less likely to use the Internet. Parents who were married and had a child with excel lent or very good health were more likely to use the Internet. Table 3. Multivariate Logistic Regression Dependent Variable: Internet Use Independent Variables a Coefficient Estimate P value 95% Upper Confidence Interval 95% Lower Confidence Inter val Parent's Gender Male 0.81 .356 0.53 1.26 Parent's Race/Ethnicity Hispanic 0.78 .251 0.50 1.20 African American non Hispanic 0.46 <.001 0.33 0.64 Other 1.25 .599 0.55 2.83 Parental Language Spoken at Home Non E nglish 0.42 <.001 0.28 0.62 Parent's Educational Attainment Less than High School 0.06 <.001 0.04 0.09 High School Graduate 0.16 <.001 0.10 0.25 Some College 0.32 <.001 0.20 0.52

PAGE 9

9 Parent's Marital Status Married 1.44 .065 0.98 2.13 Type of Household Two Parent Household 1.09 .656 0.74 1.62 Child's Health Excellent/very good 1.44 .027 1.04 1.99 Good 1.50 .011 1.10 2.04 Parent's Age (years) 0.94 <.001 0.93 0.95 Child's Age (years) 1.01 .480 0.98 1.04 a Referent groups: female, White non Hispanic, English speaking, college graduate, non married, two parent household, fair/poor health eHEALS Responses Table 4 shows the response frequencies for each eHEALS item, for those parents who use the Internet. Table 4. Response Frequencies to eHEALS Items e HEALS Item Agree Undecided Disagree % % % I know what health resources are available on the Internet 61.8% 23.6% 14.7% I know where to find helpful health resources on the Internet 66.6% 17.7% 15.7% I kn ow how to find helpful health resources on the Internet 71.0% 14.5% 14.5% I know how to use the Internet to answer my questions about my childs health 73.7% 13.8% 12.5% I know how to use the health information I find on the Internet to help my child 75.8 % 13.2% 11.0% I have the skills I need to evaluate the health resources I find on the Internet 71.5% 15.1% 13.4% I can tell high quality health resources from low quality health resources on the internet 54.0% 24.4% 21.7% I feel confident in using infor mation from the Internet to make health decisions 53.7% 22.4% 23.9% Response categories are grouped into agree (including strongly agree and agree), undecided, or disagree (including strongly disagree and disagree). The statement health information I find on the Internet to help had the highest level of agreement (76%). The two statements that parents had the highest level of disagreement with were related to confidence in using information received from the Internet to make health decisions (24%) and ability to distinguish between high and low quality information (22%). Although not presented in the table, bivariate analyses were conducted to determine if there were significant differences between parents who were conf ident in using health information versus those who were not confident and parents who were and were not able to distinguish the quality of health information. In regard to confidence in using health information, significant differences ( P <0.05) were reali zed. More confident parents were English speakers, younger parents, parents of younger children, and parents whose

PAGE 10

10 children had excellent to very good health, versus their respective referent groups. In regard to distinguishing between high and low quali ty health information, significant differences ( P <0.05) were realized. Parents better able to make the distinction had higher levels of education were younger parents, were parents of younger children, and had children with excellent to very good health, versus their respective referent groups. Multivariate Analysis e health literacy Eight ordinal logistic regression s were performed where the dependent variable represented the levels of agreement with each eHEALS statement (Table 5 ). It is important to use this model since the response categories of agree, undecided, and disagree have an ordered nature. Results from all the eight regressions indicate that parental language, parental lower educational attainment, and older parental age were all consisten tly and significantly associated with lower levels of agreement with the eight eHEALS statements. English speaking parents were about 44% less li kely to be in a higher agreement category versus their English speaking peers. Results from the last two regressions in Table V are especially important to note given the low percentage of parents who agreed with these statement. For the tell high quality health resources from low quality health college degree, living in a two parent household, older parents, and older children were all significantly less likely to be in higher agreement. It is interesting that this is the only statement where non English speaking was not confident in using information from the Internet to make health de Hispanic parents, non English speaking parents, parents with less than a high school degree, being married, living in a two parent household, having a child with excellent/good health, and being an older parent were all significantly less likely to be in higher agreement. Table 5. Multivariate Ordered Logit Regressions

PAGE 11

11 a Referent groups: female, White non Hispanic, English speaking, college graduate, non married, two parent household, fair/poor health DISCUSSION To our knowledge, o ur study is the first to focus on Internet use and e health literacy of parents of CSHCN. This study is unique in the population surveyed, the number of completed surveys, the ability to test for disparities, and the focus on CSHCN. Our findings expand t he extant knowledge in the following ways. First, our findings allow us to comment on access to the Internet for low income parents of CHSCN. Parents of CSHCN are likely to have greater impetus to seek out health information as compared to parents wh ose children do not have special health care needs. As a result, it is important that their information needs be met, and the Internet serves as a convenient, low cost repository of information for these parents. Our results show that 82% of the parents in our sample use the Internet and most (71%) have access to the Project study which found that 57% of adults with household incomes lower than $30,000 use the Internet, parents in our study seem to have greater Internet use [ 8 ] approximately 74% of the general population has gone online to access the Internet, World Wide Web, or to receive email [ 8 ] Inte restingly, 26% of the parents in our sample have used mobile devices to access the Internet. Findings

PAGE 12

12 En glish speakers are among the highest users of the mobile web [2 0 ] Future studies should determine if the lower mobile use trends demonstrated in our sample are due to differences in income. Second, our findings provide new insight s on the fac tors associated with parental Internet use. Our findings corroborate Kind et al. who also found that higher levels of education were associated with greater Internet use for African American parent [14] Our additional findings are novel to the literatur e on parental Internet use, although they do corroborate existing information on Internet use in other subgroups For example, we found that African American parents of CSHCN were less likely to have used the Internet. Although new evidence on the litera ture for CSHCN, this has been corroborated in other studies of the digital divide. Our findings on African American parents may be explained in part by broadband access trends. There has been a distinct gap in broadband access between African Americans a nd Whites; although this gap has slightly narrowed in the past few years (19 point gap in 2009 and 11 point gap in 2010) [ 5 ] Our results that older parents less educated, and non English speaking parents are less likely to use the Internet present oppor tunities for interventions. Salov e y et al described the creation of a community based computer center designed to improve computer literacy of Latino and African American parents whose children were enrolled in the Head Start program [2 1 ] The study sugg ests that parental knowledge was improved. Perhaps an intervention similar to this could be used with our population if our parents are interested in using the Internet, but do not have the skills to do so. Increasing Internet use for this vulnerable gro up is critical as many national initiatives push for the implementation of e mail communication between parents and providers, personal health records, and online education tools [2 2 ,2 3 ] Third, our findings contribute to the literature on e health literacy. To our knowledge, our study is the first to assess the e health literacy of parents of CSHCN, and we used the eHEALS scale, a validated survey instrument. Other studies that have explored e health literacy have relied on qualitative methods or non validated questionnaires to understand e health literacy; therefore, it is difficult to compare our findings. However, our findings that parents may not being able to decipher the quality of online information and lack of confidence in using informat ion to make decisions can lead to positive and negative effects on the delivery of care. For example, lack of confidence and inability to distinguish quality information may prompt parents to follow up with nurses and physicians during the health care enc ounter, leading to new dialogue and improved shared decision making between parents and providers. However, this may also lead to possible to discuss the breadth of information that during a single encounter. Results from the Pew Center indicate that 53% of adults said their most recent health search led them to seek out a second opinion or to ask their physician new questions [ 8 ] Of course, providers routi nely give educational materials to families that include links to recommended websites.

PAGE 13

13 Yet, for low income families additional interventions may be necessary such as question and answer sessions with a case manager or care coordinator to build e health s kills and confidence. Fourth, results from the multivariate analysis show that there is a significant, negative association between most of the eight components of e health literacy and not speaking English, lower educational attainment, and being an older parent. Although these findings may not seem particularly surprising, the results of the other factors were surprising. For example, Hispanic parents are about 34% more likely than their White non Hispanic counterparts to report higher agreement wi th feeling confident in using information found online. Prior evidence has noted no difference between Hispanic white and non Hispanic white parents trust in physicians and our results imply that perhaps this trust translates to online health sources wh ereby Hispanic parents are just as confident in what they find [2 4 ] African American parents in our sample were significantly less likely to locate information on the Internet, but they reported no less agreement in their ability to use or distinguish th e quality of information as compared to White parents of CSHCN. Perhaps African American parents are proficient at seeking out additional information when they do not understand what they find on the Internet, or perhaps there is incongruence in what they believe they understand and what they actually do Finally, our results suggest that parents whose CSHCN had excellent to good health had significantly higher agreement in feeling confident about using the information they found online versus parents who se CSHCN were in poor health (the referent group) Future research should focus on how e interventions can be targeted to improve the confidence of this particularly vulnerable group of parents whose CSHCN are in poor health Given that caregiver burden is directly associated with severity of a this burden may be preventing these parents from having the time to develop e health literacy [2 5 ] Ironically, parents of more severely ill children may require more information due to the comple illnesses, and lower e health literacy skills may inhibit their ability to make decisions. Several study limitations merit attention. First, although we had more than 2,300 completed surveys, the response rate fo r the survey was 58%. While this response rate is consistent with prior surveys conducted with this population, it is possible that inherent differences between responders and non responders exist [2 6 2 7 ] Second, our sample consists of parents whose chi ldren are enrolled in publicly funded health insurance programs. By definition all children enrolled in the program are members of families with low incomes. Lower socioeconomic status is associated with lower health literacy, but we could not identify a ny studies that have investigated the effect of socioeconomic status on e health literacy. Both health literacy and e health literacy are important for utilizing web based applications. Our findings, which may be less generalizable to broader socioeconom ic groups, show that even in low socioeconomic groups Internet use is high (82%) and that several questions on the eHEALS had high levels of

PAGE 14

14 agreement Research should be conducted to determine the relationship between health literacy and e health literac y. Third, our study focused on parents of CSHCN. However, we acknowledge that parents of children without special health care needs may have different e health literacy and Internet use patterns. Fourth, e health literacy in this study was self reported Future research should develop a method to compare self assessment with expert assessment in order to better interpret the results. Finally, we did not assess Internet use and e health literacy of the children and adolescents who should also be engaged in the process of seeking health information Despite these limitations, our findings contribute to the dearth of evidence health literacy. The ability to measure the e health literacy of pare nts whose children have special health care needs in an easy, valid manner, as well as comment on the factors that are associated with greater e health literacy, highlight some of the opportunities and challenges that the pediatric community faces if it wa nts to design web based applications to improve the outcomes of children and their families. Given the national push for health information technology adoption, understanding these issues in pediatric care is important. Future research should focus on sy stematically developing and testing interventions that could raise e health literacy and ultimately, increase family empowerment. ACKNOWLEDGEMENT This work was funded by contract COQQA between the University of Florida and cal Services Network Division (Shenkman and Knapp Co PIs). CONFLICT S OF INTEREST None

PAGE 15

15 REFERENCES 1. The Pew Center Internet & American Life Project. (2000). Tracking online life: How women use the Internet to cultivate relationships with family and f riends. http://www.pewinternet.org/~/media//Files/Reports/2000/Report1.pdf.pdf Archived at: http://www.webcitation.org/5uU3ikMQA. 2. Irving, L. & Levy, K. (1999). Fal ling Through the Net: Defining the Digital Divide. Washington, DC: Government Printing Office http://www.ntia.doc.gov/ntiahome/fttn99/contents.html Archived at: http://www.webcitation. org/5uTzUk84i. 3. Wangberg S, Andreassen H, Kummervold P, Wynn R, Sorensen T. Use of the internet for health purposes: trends in Norway 2000 2010. Scand J Caring Sci 2009 Dec;23(4):691 696. PMID: 19473317. 4. Renahy E, Parizot I, Chauvin P. Internet and health: lessons learned from the French national survey on households living conditions in 2005. Rev Epi Sante Publique 2008 Apr;56(2):117 125. PMID 18472374. 5. Smith, A. (2010). Home Broadband 2010. http://www.pewinternet.org/~/media//Files/Reports/2010 /Home%20broadband%2 02010.pdf. Archived at: http://www.webcitation.org/5uU3uk8T0. 6 Lorence D, Park H. Group disparities and health information: a study of online access for the underserved. Health Informatics 2008 Mar;14(1):29 38. PMID: 18258673. 7 Lor ence D, Park H. Study of education disparities and health information seeking behavior. Cyberpsychol Behav 2007 Feb;10(1):149 151. PMID: 17305464. 8 Fox, S. & Jones, S. (2009). The Social Life of Health Information. http://www.pewinternet.org/~/media//Files/Reports/2009/PIP_Health_2009.pdf Archived at: http://www.webcitation.org/5uU3xLI3e. 9 McInnes DK, Gifford AL, Kazis LE, Wagner TH. Disparities in health relat ed internet use by US veterans: results from a national survey. Inform Prim Care 2010 18(1):59 68. PMID: 20429979. 10 Lea J, Lockwood G, Ringash J. Survey of computer use for health topics by patients with head and neck cancer. Head Neck 2005 Jan;27(1):8 14. PMID: 15551302.

PAGE 16

16 11 Walsh MC, Trentham Diaz A, Schroepfer TA, Reding DJ, Campbell B, Foote ML, Kaufman S, Barrett M, Remington PL, Cleary JF. Cancer information sources used by patients to inform and influence treatment decisions. J Heal t h Comm 2010 Dec;15(4):445 463. PMID: 20574881. 12. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland B. A new definition of children with special health care needs. Pediatrics 1998 Jul; 102(1):137 140 PMID:9714637. 13. Mackert M, Kahlor L, Tyler D, Gustafson J. Designing e health interventions for low health literate culturally diverse parents: addressing the obesity epidemic. Telemed J E Health 2009 Sept ;15(7):672 677. PMID:19694596. 14. Kind T, Huang ZJ, Farr D, Pomer antz KL. Internet and computer access and use for health information in an underserved community. Ambul Ped 2005 Mar Apr ;5(2):117 21. PMID:15780014. 15. Roche MI, Skinner D. How parents search, interpret, and evaluate genetic information obtained from the internet. J Genet Couns 2009 Apr ;18(2):119 29. PMID:18937062. 16. Knijnenburg SL, Kremer LC, van den Bos C, Braam KI, Jaspers MWM. Health information needs of childhood cancer survivors and their family. Ped Blo o d Canc 2010 Jan ;54(1):123 127. PMID:19743 299. 17 Porter A, Edirippulige S. Parents of deaf children seeking hearing loss related information on the internet: the Australian experience. J Deaf Stud Deaf Educ 2007 Fall;12(4):518 529. PMID: 17456507. 18. Norman CD, Skinner HA. eHEALS: The eHealt h Literacy Scale. J Med Internet Res 2006 Nov ;8(4):e27. PMID:17213046. 19. Statistical Analysis Software for Professionals, Release 9. http://www.stata.com/products/overview.html Archived at: http://www.webcitation.org/5uTzDBNbN 2 0 Smith A (2010). Mobile Access 2010. http://www.pewinternet.org/~/media//Files/Reports/2010/PIP_Mobile_Access_20 10.pdf. Archived at: http://www.webcitation.org/5 uU40MEaO. 2 1 Salove y P, William Piehota P, Mowad L, Moret ME, Edlund D, Anderson J. Bridging the digital divide by increasing computer and cancer literacy: community technology centers for head start parents and families. J Health Comm 2009 Apr May;14(3) :228 243. PMID: 19440907.

PAGE 17

17 2 2 Health Care Financing and Organization Initiative ( 2009 ). Health Information Technology. http://www.hcfo.org/publications/health information techn ology Archived at: http://www.webcitation.org/5uTzFRJ8b 2 3 Centers for Medicare and Medicaid Services. (2009). Medicare and Medicaid Health Information Technology: Title IV of the American Recovery and Reinvestment Act. http://www.c ms.hhs.gov/apps/media/press/factsheet.asp?Counter=3466&intNum PerPage=10&checkDate=&checkKey=&srchType=1&numDays=3500&srchOpt= 0&srchData=&keywordType=All&chkNewsType=6&intPage=&showAll=&pYear= & Archived at: http://www.webcitation.org/5uTzGdfEp 2 4 language, and trust in a physician. J Health Soc Behav 2006 Dec;47(4):390 405. PMID: 17240927. 2 5 Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E. The health and well being of caregivers of children with cerebral palsy. Pediatrics 2005 Jun ;115(6):626 6 36. PMID:15930188. 2 6 Knapp C, Huang IC, Madden V, Vadaparampil S, Quinn G, Shenkman E. A n evaluation of two decision making scales for children with life limiting illnesses. Palliat Med 2009 Sept ;23(6):518 525. PMID:19346274. 2 7 Huang IC, Shenkman EA, Leite W, Knapp CA, Thompson LA, Revicki DA. Agreement was not found in adolescents' qualit y of life rated by parents and adolescents. J Clin Epidemiol 2009 Mar ;62(3):337 346. PMID:18834712.