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Comparison of supportive interactions


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 to help patients cope with their health conditions by Online health social networking allows patients and their connecting users with information resources (i.e. news, caretakers to seek and provide social support for health clinical trials, and forums). It now hosts many users and purposes. While previous studies of online health support patient communities who communicate with each other groups have address a number of research issues, there is through forums, profiles, and journals. a lack of studies that compare supportive communication Studying this type of website is important because it is the tools. This paper reports on a comparative study between technology that the mainstream is adopting and it is a levels of social support of two social networking site potentially powerful tool to use for social support. Studies functions (discussion forum and journals). Using content have demonstrated that online support groups can have a analysis to classify support types (informational and positive impact on quality of life, decision making by emotional), it was found that MedHelp’s alcoholism patients and improved health outcomes [6]. These groups community members are more likely to exchange can also contribute to a sense of empowerment for patients. information on the discussion forum and emotional support Yet, clearly there are dilemmas in terms of accuracy of on through journals. The difference in support exchanged information, and the long-term effect of such health could be related to the communication tool design promotion interventions. These unknown variables make characteristics or social roles that people perform. research in this field compelling and practical. Suggestions are made for future studies in this area. Implications from this study can help health professionals This paper describes some research problems addressed by or designers of these tools. previous studies from multiple disciplines. This paper also reports results from a preliminary study to show a possible Author Keywords avenue for future research of online support groups. Social support, online support groups, alcoholism. SIGNIFICANT PROBLEMS IN FIELD INTRODUCTION Researchers who have studied online health support groups, Over 83% of internet users in the U.S. look for health come from diverse backgrounds and have different research information online [1]. In this paper, these users are focus, such as identifying patient-level expertise [7], considered to be e-patients. 59% of e-patients have evaluating online intervention programs [3-4, 6, 8], consulted blog comments, doctor reviews, and podcasts; understanding the effects from participation in support 20% have posted comments, reviews, photos, audio, video groups [3, 6, 9-11], or studying supportive communication or tags related to health care [1]. As our society enters an behaviors [11-14]. Research problems can be grouped into era of socialized online behavior, people are increasingly three categories: (1) issues that concern health professionals tailoring their online information-gathering, targeting “just- such as quality of information and evaluating health in-time someone-like-me” health information sharing, outcomes; (2) issues that concern e-patients such as what especially young people between 18 and 49 years of age they can gain from support groups; and (3) issues that [1]. E-patients are increasingly using social networking concern the field of health informatics such as designing platforms to teach each other about conditions and technology needs to support both doctors and patients. treatments as a form of social support [2]. Understanding interactions among e-patients can provide insight to health professionals who design intervention programs for 1. Issues concerning health professionals behavior change [3-4]. Health professionals are concerned with whether patients are misinformed by online health information. Studies have A social networking site is a virtual space where registered shown that while information is sometimes wrong on these users can create profiles about themselves, upload photos, websites, users will correct their mistakes [13]. Patients keep in touch with friends and make new friends with doing their own research for health information may enjoy common interests [5]. Its distinguishing feature is the feeling prepared when making a doctor visit [11]. Online emphasis on building and reflecting social relations. support groups often contain a lot of useful experiential MedHelp (www.medhelp.org) is an example of this type of knowledge from veteran patients, such as tips for making website for e-patients; it was founded in 1994 as a resource
  • 2. hospital visits, coping with life changes, or dealing with Participation Factors insurance [7-8]. Motivations for participating in online support groups can be from an information need or desire to be altruistic [27]. Health professionals are also concerned with health Researchers have observed that user activity levels in online outcomes and evaluating online intervention programs. communities tend to vary by individual [10, 28-29]. This Online support groups can be a useful behavior change might be because of different roles a person has (i.e. technique for the design of interventions [3-4, 6]. The caretaker, patient, nurse, friend, etc) or personal values. growing popularity of social media use has inspired Additionally, these websites are a great source of social healthcare professionals to look into incorporating it into support from compassionate people who may have had healthcare programs [2], but still much is unknown about e- similar experiences [10-11, 30]. The more time people patient behavior in social media adoption. spend in an online group, the larger their online social network and the higher the satisfaction with the received 2. Issues concerning patients support [31]. Social Support Types Several studies have investigated social support exchanges Support groups are a source of social support, a broad for various online patient communities such as breast concept that has no generally accepted definition but is cancer [7], disabilities [13], HIV/Aids [21], eating disorders comprised of different kinds such as informational, [17], psychosis [14], and depression [22]. Participation in emotional, or instrumental assistance [11, 13, 15]. Although online health communities may be impacted by on the social support was studied in a variety of settings, there stigma attached to the illness [21, 32], rarity of disease, age lacks a standard typology. Social support types have been [11, 33], or gender [34]. Participation may also be because described in detail by many other papers [10-11, 13-14, 17- people want to socially compare themselves with others to 18] of two forms: resources intended to assist stressed stand out, or to find people to fit in with for sense of individual to solve or eliminate problems causing distress belongingness. More research is needed to understand how (i.e. offering information or tangible aid), and emotional social support provision and seeking is influenced by an understanding (i.e. giving compliments, recognizing individual’s social connections. achievement, sense of belonging to group) to comfort support seekers [19-20]. Other types of positive interactions 3. Issues concerning health informatics common among online support groups can include Much of the research in health informatics focuses on introductions, expressions of gratitude or congratulations designing electronic health records, databases systems, or [14, 21-22]. One line of research has attempted to describe expert systems, rather than social computing for consumers. categories of social support behaviors, which can range Of the small but growing body of literature on Internet- from simple to more complex categorizations (see [20, 23- based patient communities, researchers identified patient 25]). Some users are more likely to offer support whereas expertise [7] and various types of support [7, 17-20] from others are more likely to lurk [8, 14, 16]. While some social interactions in discussion forums, or how collect patient support research looks at the roles people have in providing data could help medical research. What has not been support (i.e. spouses, veteran patients), there lacks studies studied as much are interactions exchanged on websites looking into the relational dynamics of support exchanged specifically geared towards communication between from an online support group based on social network site. individuals who have a relationship with each other, i.e. blogs or a social network site. Further research to increase Online vs. Face-to-Face support understanding of social interactions on this type of platform Communication through the Internet allows people to be is needed since social networking is predicted to increase in anonymous, use text-based messages, interact independent popularity in the future [21]. of time and place, and have many possibilities to expand social network [26]. Computer-mediated features can affect EXISTING SOLUTIONS how people compose messages, how they acquire and Previous studies focused their research objectives on maintain relationships, and even affect group formation various issues: studying the strategies for soliciting support [26]. On the plus side, these online support groups give [18]; investigating various support types [7, 17-20]; people the sense of belongingness, and to learn how to understanding the nature of shared patient expertise such as behave and cope with situation they are in [6, 26]. On the problems in coping with breast cancer and downside, difficulties may result from lack of visual and recommendations [7]; identifying types of group aural cues found in traditional face-to-face communication interactions [22] such as  sharing personal  experience, [6, 11]. Issues of cyberstalking, e-patients leaving virtual expression of gratitude, and offering congratulations can trails, and assessing reliability of information are still of facilitate social support exchanges among group members; concern of the online environment. Traditionally, doctors or and last in comparing online empathy with offline empathy family would be first source of health information; however [20]. All the aforementioned studies used data from the Internet opens up opportunities for people to get support discussion boards rather than social network sites. without effects of stigma.
  • 3. This study focuses on the supportive interactions through categories – informational, emotional, instrumental – communication functions of a social network site. It is proposed by [23]. These concepts are appropriate for this different from previous studies because it views study as it was used in similar studies [13-14, 17-18]. Next communication medium as a tool in seeking support and the codes were tested on a small sample (n=10) to verify the that its’ selection can have impact on interactions. applicability of definitions to alcoholism related messages and modified as necessary. Frequencies of each code RESEARCH QUESTIONS category were calculated to analyze the overall levels of New social media technology shows a gap in research activity per support category (i.e. how many posts have literature that studies interactions between e-patients. The each type of support?). We ignore typos and grammatical research question that can be addressed at this time is, errors in messages. There may be instances where a support “What is the impact of communication channels on type occurs multiple times in a message (i.e. two book interactions where social support is exchanged across social referrals) the type is counted only once per message. media (i.e. discussion forums, and journals)?” This question could be explored more fully with more specific questions Coding Scheme such as the following: There were three support types with sublevel concepts. Messages were coded by sublevel concept then grouped 1. Do users select different communication tools for into the top level category for comparing informational vs. different purposes? emotional supports. Instrumental support was not found in 2. What are patterns of supportive interactions across this data and not reported. social media? 3. What are the different supportive roles people perform Informational support in posts provide information (i.e. while participating in their social network and how is it personal background information, describing certain communicated? incidents, coping techniques, etc.) or request information (i.e. advice, opinions, etc.) [14, 17-18, 23]. Subcategories PRELIMINARY ANALYSIS include: advice, facts, personal experiences, information This section discusses some preliminary research ideas and referral, and opinions. a proposed approach to compare two data samples. Social Nurturant support in posts provides emotional expressions support types were identified in an online alcoholism of caring or concern (i.e. alleviating feelings of guilt, community for comparison between threads on a discussion empathy, etc.) or can implicitly ask for support (i.e. forum (a public tool) vs. user journals (more personal). validation of problem or feelings, presence of others to Preliminary results on the levels of social support identified avoid feeling alone, etc.) [17-18, 23-25] Subcategories are reported. Knowing characteristics of social support include: esteem, network, and emotional. offered and sought in these virtual groups will help us to Instrumental Support: provision of material or financial aid, better understand the range of information needs (i.e. or services [14, 17-18, 23]. There are no examples available advice) in a supportive electronic environment. from the dataset. An example is offering to drive someone to Alcoholics Anonymous meeting. MedHelp has a few communication tools for members to use in conveying social support. The discussion forums are Results publicly accessible by members and nonmembers alike, The first sample consists of forum posts (FP=81) and where each thread is structured by an initial post and comments (FC=412), which totals to 493 messages. Forum corresponding comments replied to the post. Users’ posts were created by patients themselves (n=56) or journals follow the same structure – posts and comments – caretakers (n=14). 11 posts remain unidentified. The second but privacy level can be set to private, friends only, or sample had 423 messages, composed of journal posts everybody. Each user has the option to show activity on (JP=88) and comments (JC=335). their profile page – i.e. new journal and forum posts, Sample Forums Journals whereas forum activity is all displayed on the forum page. Size N = 493 N = 423 Posts FP = 81 JP = 88 Approach  Comments FC = 412 JC = 335 The MedHelp alcoholism community was selected for this Figure 1. Sample Sizes preliminary study. Data was obtained from the discussion forum and the journals from members of the community The results from forum threads and journals are presented using a web crawler on September 9th, 2009. Because first by support type offered and then by support type emotional content is not currently recognizable with sought. Instrumental support was not found in either sample automatic methods, a qualitative content analysis was used and thus not presented in this section. to classify support types from three months time period. Support Offered Concepts for coding social support types were developed Forum messages offered more informational support first by reviewing related studies, their definitions and (84.7%) than nurturant support (58.6%). On the other hand, examples. Concepts were grouped into three high-level
  • 4. journal messages were more likely to have offered nurturant 13.6% journal posts sought information such as advice or support (80.3%) than informational support (53.1%). 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 Informational Nurturant significantly less requested support. 8.35% sought informational support such as clarification and a minimal (n=81) FP 67 0.29% was looking for emotional support. 13 351 For both samples, forum users were more likely to (n=412) FC 276 exchange information than any other type of support. (n=88) JP 81 Journal posts were more likely to request emotional 65 support, and journal comments are likely to respond with (n=335) JC 174 provision of emotional support. This might be related to the 275 connection between individuals using journals who interact at a more intimate level. Additionally, users may be using Figure 2. Offered Support the forum as a way to reach out to a greater network to ask 82.7% of forum posts provided informational support. For for opinions. Research on Yahoo! Answers portal shows a instance, users often introduced themselves by describing large percentage of users asking for opinions, which may how much they drink. Users were less likely to start threads indicate a need for advice on everyday decisions [26]. It offering nurturant support (16%) such as encouragement to seems that users choose each communication tool for stay sober. Some messages offered both information and different purposes [27]. emotional support. Many comments (85.2%) offered information such as updates on a situation or answering Suggested Research questions in the posts, while a lesser majority (66.9%) In the subsequent phases of the preliminary study, offered emotional support such as sympathy. investigations will be made to understand more about social relations among users who exchange social support. Social 92.0% of journal posts provided some form of information psychology research explored issues relationship intimacy and less likely to have an emotional nature (73.8%). 51.2% and trust [28-29] as a factor for exchanging social support. of the comments offered some form of information in People have relationships in different contexts of shared response to the journal post, whereas 82.0% of comments experience (i.e. work, family, book club) [11] and these offered nurturant. relations may impact motives for participating in online support groups. Requested Support Forum users sought more informational support (24.9%) The concept of social network analysis (i.e. measuring than emotional support (15%), and journal users sought closeness of two individuals, the strength of their tie, and more emotional support (14.6%) than information (10.6%). 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 Informational Nurturant study of social support types with relational dynamics. (n=81) FP 59 36 Contributions from research (n=412)  … 64 In this study, we have compared the social supports in 26 forum and journal formats of MedHelp. The result in this (n=88) JP 12 work can be useful in many ways: (1) providing more 32 insights to technological design factors and purpose behind (n=335)  … 28 supportive communications, and (2) providing insights on 14 how online intervention program can be developed and promoted. Figure 3. Requested Support ISSUES FOR DISCUSSION AT CONSORTIUM 72.8% forum posts sought information (i.e. recommended It would be wonderful to have the opportunity to discuss the drugs for treatment). A smaller 44.4% sought emotional pros and cons of this research direction that compares social support. However, the comments had much less requested media communication functions. Here are some specific support. 15.5% sought informational support such as questions: How to do further qualitative analysis and report clarification of information and a minimal 6.3% were results in such a way that multiple samples can be looking for emotional support such as validation. 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.)?
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