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Comparison of supportive interactions
Comparison of supportive interactions
Comparison of supportive interactions
Comparison of supportive interactions
Comparison of supportive interactions
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Comparison of supportive interactions

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AMIA doctoral consortium

AMIA doctoral consortium

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  • 1. A comparative study of supportive interactions between e-patients across communication functions of a social network site Katherine Y. Chuang College of Information Science & Technology Drexel University, Philadelphia, PA, USA katychuang@drexel.edu ABSTRACT Online health social networking allows patients and their caretakers to seek and provide social support for health purposes. While previous studies of online health support groups have address a number of research issues, there is a lack of studies that compare supportive communication tools. This paper reports on a comparative study between levels of social support of two social networking site functions (discussion forum and journals). Using content analysis to classify support types (informational and emotional), it was found that MedHelp’s alcoholism community members are more likely to exchange information on the discussion forum and emotional support on through journals. The difference in support exchanged could be related to the communication tool design characteristics or social roles that people perform. Suggestions are made for future studies in this area. Implications from this study can help health professionals or designers of these tools. Author Keywords Social support, online support groups, alcoholism. INTRODUCTION Over 83% of internet users in the U.S. look for health information online [1]. In this paper, these users are considered to be e-patients. 59% of e-patients have consulted blog comments, doctor reviews, and podcasts; 20% have posted comments, reviews, photos, audio, video or tags related to health care [1]. As our society enters an era of socialized online behavior, people are increasingly tailoring their online information-gathering, targeting “just- in-time someone-like-me” health information sharing, especially young people between 18 and 49 years of age [1]. E-patients are increasingly using social networking platforms to teach each other about conditions and treatments as a form of social support [2]. Understanding interactions among e-patients can provide insight to health professionals who design intervention programs for behavior change [3-4]. A social networking site is a virtual space where registered users can create profiles about themselves, upload photos, keep in touch with friends and make new friends with common interests [5]. Its distinguishing feature is the emphasis on building and reflecting social relations. MedHelp (www.medhelp.org) is an example of this type of website for e-patients; it was founded in 1994 as a resource to help patients cope with their health conditions by connecting users with information resources (i.e. news, clinical trials, and forums). It now hosts many users and patient communities who communicate with each other through forums, profiles, and journals. Studying this type of website is important because it is the technology that the mainstream is adopting and it is a potentially powerful tool to use for social support. Studies have demonstrated that online support groups can have a positive impact on quality of life, decision making by patients and improved health outcomes [6]. These groups can also contribute to a sense of empowerment for patients. Yet, clearly there are dilemmas in terms of accuracy of information, and the long-term effect of such health promotion interventions. These unknown variables make research in this field compelling and practical. This paper describes some research problems addressed by previous studies from multiple disciplines. This paper also reports results from a preliminary study to show a possible avenue for future research of online support groups. SIGNIFICANT PROBLEMS IN FIELD Researchers who have studied online health support groups, come from diverse backgrounds and have different research focus, such as identifying patient-level expertise [7], evaluating online intervention programs [3-4, 6, 8], understanding the effects from participation in support groups [3, 6, 9-11], or studying supportive communication behaviors [11-14]. Research problems can be grouped into three categories: (1) issues that concern health professionals such as quality of information and evaluating health outcomes; (2) issues that concern e-patients such as what they can gain from support groups; and (3) issues that concern the field of health informatics such as designing technology needs to support both doctors and patients. 1. Issues concerning health professionals Health professionals are concerned with whether patients are misinformed by online health information. Studies have shown that while information is sometimes wrong on these websites, users will correct their mistakes [13]. Patients doing their own research for health information may enjoy feeling prepared when making a doctor visit [11]. Online support groups often contain a lot of useful experiential knowledge from veteran patients, such as tips for making
  • 2. hospital visits, coping with life changes, or dealing with insurance [7-8]. Health professionals are also concerned with health outcomes and evaluating online intervention programs. Online support groups can be a useful behavior change technique for the design of interventions [3-4, 6]. The growing popularity of social media use has inspired healthcare professionals to look into incorporating it into healthcare programs [2], but still much is unknown about e- patient behavior in social media adoption. 2. Issues concerning patients Social Support Types Support groups are a source of social support, a broad concept that has no generally accepted definition but is comprised of different kinds such as informational, emotional, or instrumental assistance [11, 13, 15]. Although social support was studied in a variety of settings, there lacks a standard typology. Social support types have been described in detail by many other papers [10-11, 13-14, 17- 18] of two forms: resources intended to assist stressed individual to solve or eliminate problems causing distress (i.e. offering information or tangible aid), and emotional understanding (i.e. giving compliments, recognizing achievement, sense of belonging to group) to comfort support seekers [19-20]. Other types of positive interactions common among online support groups can include introductions, expressions of gratitude or congratulations [14, 21-22]. One line of research has attempted to describe categories of social support behaviors, which can range from simple to more complex categorizations (see [20, 23- 25]). Some users are more likely to offer support whereas others are more likely to lurk [8, 14, 16]. While some social support research looks at the roles people have in providing support (i.e. spouses, veteran patients), there lacks studies looking into the relational dynamics of support exchanged from an online support group based on social network site. Online vs. Face-to-Face support Communication through the Internet allows people to be anonymous, use text-based messages, interact independent of time and place, and have many possibilities to expand social network [26]. Computer-mediated features can affect how people compose messages, how they acquire and maintain relationships, and even affect group formation [26]. On the plus side, these online support groups give people the sense of belongingness, and to learn how to behave and cope with situation they are in [6, 26]. On the downside, difficulties may result from lack of visual and aural cues found in traditional face-to-face communication [6, 11]. Issues of cyberstalking, e-patients leaving virtual trails, and assessing reliability of information are still of concern of the online environment. Traditionally, doctors or family would be first source of health information; however the Internet opens up opportunities for people to get support without effects of stigma. Participation Factors Motivations for participating in online support groups can be from an information need or desire to be altruistic [27]. Researchers have observed that user activity levels in online communities tend to vary by individual [10, 28-29]. This might be because of different roles a person has (i.e. caretaker, patient, nurse, friend, etc) or personal values. Additionally, these websites are a great source of social support from compassionate people who may have had similar experiences [10-11, 30]. The more time people spend in an online group, the larger their online social network and the higher the satisfaction with the received support [31]. Several studies have investigated social support exchanges for various online patient communities such as breast cancer [7], disabilities [13], HIV/Aids [21], eating disorders [17], psychosis [14], and depression [22]. Participation in online health communities may be impacted by on the stigma attached to the illness [21, 32], rarity of disease, age [11, 33], or gender [34]. Participation may also be because people want to socially compare themselves with others to stand out, or to find people to fit in with for sense of belongingness. More research is needed to understand how social support provision and seeking is influenced by an individual’s social connections. 3. Issues concerning health informatics Much of the research in health informatics focuses on designing electronic health records, databases systems, or expert systems, rather than social computing for consumers. Of the small but growing body of literature on Internet- based patient communities, researchers identified patient expertise [7] and various types of support [7, 17-20] from interactions in discussion forums, or how collect patient data could help medical research. What has not been studied as much are interactions exchanged on websites specifically geared towards communication between individuals who have a relationship with each other, i.e. blogs or a social network site. Further research to increase understanding of social interactions on this type of platform is needed since social networking is predicted to increase in popularity in the future [21]. EXISTING SOLUTIONS Previous studies focused their research objectives on various issues: studying the strategies for soliciting support [18]; investigating various support types [7, 17-20]; understanding the nature of shared patient expertise such as problems in coping with breast cancer and recommendations [7]; identifying types of group interactions [22] such as  sharing personal  experience, expression of gratitude, and offering congratulations can facilitate social support exchanges among group members; and last in comparing online empathy with offline empathy [20]. All the aforementioned studies used data from discussion boards rather than social network sites.
  • 3. This study focuses on the supportive interactions through communication functions of a social network site. It is different from previous studies because it views communication medium as a tool in seeking support and that its’ selection can have impact on interactions. RESEARCH QUESTIONS New social media technology shows a gap in research literature that studies interactions between e-patients. The research question that can be addressed at this time is, “What is the impact of communication channels on interactions where social support is exchanged across social media (i.e. discussion forums, and journals)?” This question could be explored more fully with more specific questions such as the following: 1. Do users select different communication tools for different purposes? 2. What are patterns of supportive interactions across social media? 3. What are the different supportive roles people perform while participating in their social network and how is it communicated? PRELIMINARY ANALYSIS This section discusses some preliminary research ideas and a proposed approach to compare two data samples. Social support types were identified in an online alcoholism community for comparison between threads on a discussion forum (a public tool) vs. user journals (more personal). Preliminary results on the levels of social support identified are reported. Knowing characteristics of social support offered and sought in these virtual groups will help us to better understand the range of information needs (i.e. advice) in a supportive electronic environment. MedHelp has a few communication tools for members to use in conveying social support. The discussion forums are publicly accessible by members and nonmembers alike, where each thread is structured by an initial post and corresponding comments replied to the post. Users’ journals follow the same structure – posts and comments – but privacy level can be set to private, friends only, or everybody. Each user has the option to show activity on their profile page – i.e. new journal and forum posts, whereas forum activity is all displayed on the forum page. Approach  The MedHelp alcoholism community was selected for this preliminary study. Data was obtained from the discussion forum and the journals from members of the community using a web crawler on September 9th , 2009. Because emotional content is not currently recognizable with automatic methods, a qualitative content analysis was used to classify support types from three months time period. Concepts for coding social support types were developed first by reviewing related studies, their definitions and examples. Concepts were grouped into three high-level categories – informational, emotional, instrumental – proposed by [23]. These concepts are appropriate for this study as it was used in similar studies [13-14, 17-18]. Next the codes were tested on a small sample (n=10) to verify the applicability of definitions to alcoholism related messages and modified as necessary. Frequencies of each code category were calculated to analyze the overall levels of activity per support category (i.e. how many posts have each type of support?). We ignore typos and grammatical errors in messages. There may be instances where a support type occurs multiple times in a message (i.e. two book referrals) the type is counted only once per message. Coding Scheme There were three support types with sublevel concepts. Messages were coded by sublevel concept then grouped into the top level category for comparing informational vs. emotional supports. Instrumental support was not found in this data and not reported. Informational support in posts provide information (i.e. personal background information, describing certain incidents, coping techniques, etc.) or request information (i.e. advice, opinions, etc.) [14, 17-18, 23]. Subcategories include: advice, facts, personal experiences, information referral, and opinions. Nurturant support in posts provides emotional expressions of caring or concern (i.e. alleviating feelings of guilt, empathy, etc.) or can implicitly ask for support (i.e. validation of problem or feelings, presence of others to avoid feeling alone, etc.) [17-18, 23-25] Subcategories include: esteem, network, and emotional. Instrumental Support: provision of material or financial aid, or services [14, 17-18, 23]. There are no examples available from the dataset. An example is offering to drive someone to Alcoholics Anonymous meeting. Results The first sample consists of forum posts (FP=81) and comments (FC=412), which totals to 493 messages. Forum posts were created by patients themselves (n=56) or caretakers (n=14). 11 posts remain unidentified. The second sample had 423 messages, composed of journal posts (JP=88) and comments (JC=335). Sample Forums Journals Size N = 493 N = 423 Posts FP = 81 JP = 88 Comments FC = 412 JC = 335 Figure 1. Sample Sizes The results from forum threads and journals are presented first by support type offered and then by support type sought. Instrumental support was not found in either sample and thus not presented in this section. Support Offered Forum messages offered more informational support (84.7%) than nurturant support (58.6%). On the other hand,
  • 4. journal messages were more likely to have offered nurturant support (80.3%) than informational support (53.1%). 275 65 276 13 174 81 351 67 (n=335) JC (n=88) JP (n=412) FC (n=81) FP Informational Nurturant Figure 2. Offered Support 82.7% of forum posts provided informational support. For instance, users often introduced themselves by describing how much they drink. Users were less likely to start threads offering nurturant support (16%) such as encouragement to stay sober. Some messages offered both information and emotional support. Many comments (85.2%) offered information such as updates on a situation or answering questions in the posts, while a lesser majority (66.9%) offered emotional support such as sympathy. 92.0% of journal posts provided some form of information and less likely to have an emotional nature (73.8%). 51.2% of the comments offered some form of information in response to the journal post, whereas 82.0% of comments offered nurturant. Requested Support Forum users sought more informational support (24.9%) than emotional support (15%), and journal users sought more emotional support (14.6%) than information (10.6%). 14 32 26 36 28 12 64 59 (n=335) … (n=88) JP (n=412) … (n=81) FP Informational Nurturant Figure 3. Requested Support 72.8% forum posts sought information (i.e. recommended drugs for treatment). A smaller 44.4% sought emotional support. However, the comments had much less requested support. 15.5% sought informational support such as clarification of information and a minimal 6.3% were looking for emotional support such as validation. 13.6% journal posts sought information such as advice or other topics unrelated to alcohol abuse (i.e. pregnancy). Much more posts (36.3%) express need for emotional support. Conversely, in the comments there was significantly less requested support. 8.35% sought informational support such as clarification and a minimal 0.29% was looking for emotional support. For both samples, forum users were more likely to exchange information than any other type of support. Journal posts were more likely to request emotional support, and journal comments are likely to respond with provision of emotional support. This might be related to the connection between individuals using journals who interact at a more intimate level. Additionally, users may be using the forum as a way to reach out to a greater network to ask for opinions. Research on Yahoo! Answers portal shows a large percentage of users asking for opinions, which may indicate a need for advice on everyday decisions [26]. It seems that users choose each communication tool for different purposes [27]. Suggested Research In the subsequent phases of the preliminary study, investigations will be made to understand more about social relations among users who exchange social support. Social psychology research explored issues relationship intimacy and trust [28-29] as a factor for exchanging social support. People have relationships in different contexts of shared experience (i.e. work, family, book club) [11] and these relations may impact motives for participating in online support groups. The concept of social network analysis (i.e. measuring closeness of two individuals, the strength of their tie, and their social roles) to study how multiple individuals interact with each other in a larger group setting may be useful. A mixed methods approach would be needed to integrate study of social support types with relational dynamics. Contributions from research In this study, we have compared the social supports in forum and journal formats of MedHelp. The result in this work can be useful in many ways: (1) providing more insights to technological design factors and purpose behind supportive communications, and (2) providing insights on how online intervention program can be developed and promoted. ISSUES FOR DISCUSSION AT CONSORTIUM It would be wonderful to have the opportunity to discuss the pros and cons of this research direction that compares social media communication functions. Here are some specific questions: How to do further qualitative analysis and report results in such a way that multiple samples can be compared? Would social network analysis metrics be useful to this line of work, for future understanding of patterns of behavior (i.e. measuring in/out degrees, centrality, etc.)?
  • 5. CONCLUSION The increase of people searching for health information online and using social media opens up a new door for considering this technology for online intervention programs. This paper summarized research literature relating to the study online support groups. A preliminary study was reported as an example of further research in the field. Some ideas for future studies were suggested as well as their contributions. REFERENCES 1. Fox, S. and S. Jones, The Social Life of Health Information Americans’ pursuit of health takes place within a widening network of both online and offline sources. 2009, Pew Internet & American Life Project. 2. Kielstra, P., Doctor innovation: Shaking up the health system. 2009, Economist Intelligence Unit. 3. Lindsay, S., et al., The health impact of an online heart disease support group: a comparison of moderated versus unmoderated support. Health Education Research, 2009. 24(4): p. 646-654. 4. Wantland, D.J., et al., The Effectiveness of Web-Based vs. Non-Web-Based Interventions: A Meta-Analysis of Behavioral Change Outcomes. Journal of Medical Internet Research, 2004. 6(4): p. e40. 5. boyd, d. and N. Ellison, Social Network Sites: Definition, History, and Scholarship. JCMC, 2007. 13 (1). 6. White, M. and S.M. Dorman, Receiving social support online: implications for health education. Health Education Research, 2001. 16(6): p. 693-707. 7. Civan, A. and W. Pratt, Threading Together Patient Expertise, in AMIA 2007 Symptosium Proceedings. 2007: Chicago, IL. p. 140-144. 8. Cunningham, J.A., T. van Mierlo, and R. Fournier, An online support group for problem drinkers: AlcoholHelpCenter.net. Patient Education and Counseling, 2008. 70(2): p. 193-198. 9. Høybye, M.T., C. Johansen, and T. Tjørnhøj-Thomsen, Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology, 2005. 14(3): p. 211-220. 10. Leimeister, J.M., et al., Do virtual communities matter for the social support of patients?: Antecedents and effects of virtual relationships in online communities. Information Technology & People, 2008. 21(4): p. 350-374. 11. Wright, K.B. and S.B. Bell, Health-related Support Groups on the Internet: Linking Empirical Findings to Social Support and Computer-mediated Communication Theory. J Health Psychol, 2003. 8(1): p. 39-54. 12. Ancker, J.S., et al., Peer-to-Peer Communication, Cancer Prevention, and the Internet. Journal of Health Communication: International Perspectives, 2009. 14(1 supp 1): p. 38 - 46. 13. Braithwaite, D.O., V.R. Waldron, and J. Finn, Communication of Social Support in Computer-Mediated Groups for People With Disabilities. Health Communication, 1999. 11(2): p. 123 - 151. 14. Chang, H.-J., Online Supportive Interactions: Using a Network Approach to Examine Communication Patterns Within a Psychosis Social Support Group in Taiwan. Journal of the American Society for Information Science and Technology, 2009. 60(7): p. 1504-1518. 15. Tanis, M., Online social support groups, in The Oxford handbook of Internet psychology, A.N. Joinson, K. McKenna, and T. Postmes, Editors. 2007, Oxford University Press. p. 139-153. 16. Chuang, K. and C.C. Yang, Social Support in Online Healthcare Social Networking., in iConfeerence 2010. 2010: Urbana-Champaign, IL. 17. Coursaris, C.K. and M. Liu, An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behavior, 2009. 25(4): p. 911-918. 18. Eichhorn, K.C., Soliciting and Providing Social Support Over the Internet: An Investigation of Online Eating Disorder Support Groups. Journal of Computer-Mediated Communication, 2008. 14(1): p. 67-78. 19. McCormack, A., Individuals with eating disorders and the use of online support groups as a form of social support. Computers, Informatics, Nursing: CIN, 2010. 28(1): p. 12-19. 20. Pfeil, U. and P. Zaphiris, Patterns of empathy in online communication, in SIGCHI conference on Human factors in computing systems 2007: San Jose, CA. p. 919 - 928 21. Eysenbach, G., Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. Journal of Medical Internet Research, 2008. 10(3): p. e22. 22. Helgeson, V.S. and S. Cohen, Social Support and Adjustment to Cancer: Reconciling Descriptive, Correlational, and Intervention Research. Health Psychology 1996. 15(2): p. 135-148. 23. Cutrona, C.E. and J.A. Suhr, Controllability of Stressful Events and Satisfaction With Spouse Support Behaviors. Communication Research, 1992. 19(2): p. 154-174. 24. Pfeil, U. and P. Zaphiris, Investigating social network patterns within an empathic online community for older people. Comput. Hum. Behav., 2009. 25(5): p. 1139-1155. 25. Preece, J., Empathy online. Virtual Reality, 1999. 4(1): p. 74- 84. 26. Agichtein, E., et al., Finding high-quality content in social media., in Proceedings of the international conference on Web search and web data mining. 2008. 27. Chuang, K.Y. and C.C. Yang, Helping you to help me: Exploring Supportive Interaction in Online Health Community, in ASIST 2010. 2010: Pittsburgh, PA. 28. Radin, P.M., "Hello, my friends": Social capital and transformations of trust in a grassroots breast cancer Website. 2001. 29. Rau, P.-L.P., Q. Gao, and Y. Ding, Relationship between the level of intimacy and lurking in online social network services. Computers in Human Behavior, 2008. 24(6): p. 2757-2770.

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