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An examination of social and informational support behavior codes on the Internet: The case of online health communities
Library & Information Science Research 39 (2017) 63–68
Contents lists available at ScienceDirect
Library & Information Science Research
An examination of social and informational support behavior codes on the Internet: The case of online health communities Jenny Bronstein Department of Information Science, Bar-Ilan University, Ramat Gan, 52900, Israel
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Article history: Received 30 August 2015 Received in revised form 30 March 2016 Accepted 18 January 2017 Available online 6 February 2017
1. Introduction Online forums have been defined as “a group of individuals with a common interest or a shared purpose, whose interactions are governed by policies in the form of rules, rituals, or protocols; who have ongoing and persistent interactions; who use electronic communication as the primary form of interaction to support and mediate social interaction and facilitate a sense of togetherness” (Rodgers & Chen, 2005). Online forums have become important sources of information because (a) being inexpensive they minimize social class distinctions because (Winzelberg, 1997); (b) they allow people to disclose health information with less risk than face-to-face communication because of the Internet's inherent invisibility and anonymity (Giles & Newbold, 2013; Kummervold et al., 2008); and (c) their asynchronous nature allows users to plan their messages, to manage their emotions and to disconnect from the group after posting a personal or emotional message (Barak, Boniel-Nissim, & Suler, 2008; Eichhorn, 2008; Perron, 2002). Online health communities are a specialized subset of online forums that provide their users with valuable informal information in the form of personalized health experiences and emotional support and empower users to manage their illness (El Morr, Cole, & Perl, 2014). In many cases they function as an intermediate step between individual coping and professional therapy (Chen, 2014; Winzelberg, 1997). These characteristics make online health communities an influential and unique source of information (Bronstein, 2014; Sudau et al., 2014). These communities are used by 8% of Internet users living with chronic disease (Fox & Purcell, 2010). 2. Problem statement A central motive for participating in virtual health communities is seeking and providing informational and social support (Elwell, E-mail address: [email protected].
http://dx.doi.org/10.1016/j.lisr.2017.01.006 0740-8188/© 2017 Elsevier Inc. All rights reserved.
Grogan, & Coulson, 2011; Mazzoni & Cicognani, 2014; Riley, 2013; van Uden-Kraan et al., 2008). Users dealing with health concerns find in these sites empathic communities of people facing similar challenges (Preece, 1999). Because they transcend geographical and temporal constrains, virtual health communities have expanded users' social networks (Wright & Bell, 2003) allowing them more social choices when they engage in supportive interactions (Hlebec, Manfreda, & Vehovar, 2006). However, little is known about the specific social support exchanges in online health communities. By examining this issue, a better understanding can be achieved of the role that these online spaces play in health related information behavior and of the social role that has characterized the Internet in recent years. To close this gap, the current study explored the different types of social support requested and offered in the two virtual health communities dealing with obsessivecompulsive disorder (OCD). This exploration included identifying whether the support asked for and received was either informational or supportive in nature (Cutrona & Suhr, 1994) and then categorizing each utterance under a specific support behavior code (Cutrona & Suhr, 1992) and identifying which behavior code was used more frequently (i.e., had the highest number of occurrences) both in the posts and in the replies. Hence, the following research questions were examined: RQ1. Which type of social support behavior codes are used in OCD online health communities when requesting and offering social support? RQ2. Which is the most frequently used social support behavior codes in the posts in OCD online health communities? RQ3. Which is the most frequently used social support behavior code in the replies in OCD online health communities? 3. Literature review 3.1. Online health communities Online health communities have been studied extensively. Researchers have investigated the impact that these online resources have on dealing with critical or chronic diseases (Chang, 2009; Chen, 2014; Eichhorn, 2008; Guo & Goh, 2014; Johnston, Worrell, Di Gangi, & Wasko, 2013; Rodgers & Chen, 2005; Sudau et al., 2014), how often people use the online health communities looking for health information (Kummervold et al., 2008), which sources of information are used in online health communities (Rodgers & Chen, 2005; Sudau et al.,
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2014), which factors contribute or obstruct the use of the online health communities when searching for health information (Lemire, Paré, Sicotte, & Harvey, 2008), and how social support is requested and offered on these sites (Mazzoni & Cicognani, 2014; Riley, 2013). 3.2. Social support in virtual health communities Social support is defined by Burleson and MacGeorge (2002) as “verbal and nonverbal behavior produced with the intention of providing assistance to others perceived as needing that aid” (p. 374). Support acts as a structure to help individuals manage their uncertainty about a situation (Apker & Ray, 2000). By managing the uncertainty, individuals feel more in control, better informed and more actively involved. Participation in a virtual health community is one way to reduce uncertainty and to develop coping mechanisms (Riley, 2013). Prior studies that investigated the use of different online environments in health management issues have implemented Cutrona and Suhr's (1992, 1994) behavior codes for social support. These studies have revealed that users of online health communities exchange factual and experiential information (Savolainen, 2010) as well as network links (Chang, 2009), disclose and share personal experiences as a form of social support (Coursaris & Liu, 2009), and offer tangible assistance to other members of the group (Coulson, Buchanan, & Aubeeluck, 2007). Other studies have examined the personal and social benefits that characterize participation in online health communities (Johnston et al., 2013). Participants in an online breast cancer group enjoyed informational and emotional support, experienced greater optimism toward the illness and improved their stress coping skills (Rodgers & Chen, 2005; Tanis, 2008). Women suffering from infertility provided emotional support to other community members in the form of empathy and sharing of personal experiences as well as the provision of practical information and advice (Malik & Coulson, 2010). Three studies dealing with breast cancer (Colineau & Paris, 2010), eating disorders (Eichhorn, 2008) and AIDS (Guo & Goh, 2014) also found that emotional support was one of the major roles of online health communities when dealing with an illness. Emotional support can take many forms, such as encouragement, validation, and reminders of presence (Chuang & Yang, 2012), or peer support and the expression of positive emotions (Lasker, Sogolow, & Sharim, 2005; Perron, 2002). Johnson and Ambrose (2006) asserted that the emotional support provided in the forums developed “a sense of identity or the camaraderie that members feel toward one another” and that the sharing of personal experiences with others suffering from the same disease helped users of online health communities to comprehend their treatments to a greater extent (p. 111). Because of the anonymity facilitated in computer-mediated communications, online health communities provide a safe environment for self-disclosure for people suffering from health challenges conditions who need support from others (Coursaris & Liu, 2009; Tanis, 2008; Wright & Bell, 2003) by lowering the threshold for the disclosure and discussion of their illnesses (Kummervold et al., 2008). In a study about help-seeking mechanisms used by adults suffering from mental health issues, DeAndrea (2015) claimed that as fear of social stigma increases so does the preference of using online health communities over other forms of help. Social support can also come in the form of information or experiential knowledge; prior studies show that online health communities have become an important source of health information and network links (Chang, 2009; Sudau et al., 2014). Studies have found that these online spaces fill the need for factual or practical information about disease, medication, treatment and coping skills (Kummervold et al., 2008; Mazzoni & Cicognani, 2014) and were regarded “particularly valuable” (Dolce, 2011, p. 358) because they complemented the information received from care providers and provided users with support, and a feeling of empowerment (Dolce, 2011). Informational requests could be presented as direct questions (Wikgren, 2003), but studies have also found that when posting a question on an online health community site users often are looking for more than factual information since the strength of these sites is in supporting the sharing of experiential
and practice knowledge (Bronstein, 2014; Hughes & Cohen, 2011; Savolainen, 2010, 2011). Furthermore, sharing of personal experiences can lead to a collective empowerment of the online community (Petrič & Petrovčič, 2014). As Bronstein (2014) stated, users look for “experiential information that makes sense because it is based on past experiences that make it relevant to their everyday problems and concerns regarding their disorder”. 3.3. Obsessive compulsive disorder (OCD) Obsessive-compulsive disorder is characterized by intrusive obsessional thoughts and ritualistic compulsive behaviors that could become a distressing and disabling condition (Black & Blum, 1992). These obsessions or compulsions may include checking or cleaning, hoarding, obsessions concerning symmetry or exactness, ordering and arranging obsessions and compulsions, and religious obsessions. This symptomatic disparity can result in two people suffering from obsessive-compulsive disorder that present totally different symptoms, this disparity can make the diagnosis difficult (Leckman et al., 1997). OCD is a common disorder; the U.S. National Institutes of Health (2013) reports that about 1% of the adult population suffers from some kind of obsessive compulsion. 4. Methods 4.1. Conceptual framework The present study draws on Cutrona and Suhr's (1992, 1994) two coding schemes for social support developed to aid married couples in dealing with stressful events. Cutrona and Suhr (1994) categorized social support behavior codes into two major categories: (1) actionTable 1 Social support behavior codes. Action-facilitating support behavior codes In the posts Asking for a suggestion or advice Request for experiential knowledge
Requests or elicits information some users asked the group directly for advice or factual information Requests or elicits others users to share with them their personal experiences (Bronstein, 2014; van Uden-Kraan et al., 2008). This behavior code did not appear in Cutrona and Suhr's (1992) scheme.
In the replies Providing suggestion or advice Referral Situation appraisal Teaching Nurturant support behavior codes In the posts Self-disclosure
Offers ideas or suggested actions Provides additional sources of information Provides a reassessment of the situation (as a personal opinion) Provides detailed factual information
Posters disclose personal information as an expression of need for support to elicit emotional support from the community (Eichhorn, 2008; Rodgers & Chen, 2005). This behavior code did not appear in Cutrona and Suhr's (1992) scheme.
In the replies Empathy
Encouragement Sympathy
Expresses understanding of the situation by disclosing an experiential knowledge in the form of a personal situation as a way to communicate understanding Provides the recipient with hope and confidence Expresses sorrow or regret for the recipient's situation
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facilitating support intended to assist the individual in solving problems and involving informational and tangible support, and (2) nurturant support that encompasses efforts to comfort or console, without direct efforts to solve the problem. Table 1 details the coding scheme used in the data analysis.
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the analysis, data were analyzed statistically to find the number of occurrences for each behavior code. 5. Findings 5.1. Textual and descriptive findings
4.2. Data collection and analysis Data were collected from the following online health communities: 1. Psychforums1 2. Daily Strength2 These two sites were selected based on the following criteria: 1. They are user led—not owned or constructed by medical professionals or institutions (Giles & Newbold, 2013). 2. They are public online spaces, not password protected. Hence, users of these groups are aware that the information they post is publicly available to all Internet users (Vayreda & Antaki, 2009). A sample of 634 items, consisting of 200 posts and 434 corresponding replies, was collected; this included all of the messages posted on both online health communities from October to December 2013. The individual message posting (whether a post or a reply) was analyzed to examine the different expressions of social support within the unit, and each utterance was categorized separately. Although most studies assign a single code to each post, the present study opted for a multiple codes coding scheme since “assigning multiple codes may more accurately reflect what is going on,” (Chen, 2014, p. 122). That is, because a post or a reply could convey social support in various ways and present several social support codes, these information units were divided into utterances that conveyed a single message and these utterances were taken as the minimal information unit for analysis. The data analysis consisted first of a qualitative phase that categorized the data collected; this was then complemented by quantitative analysis. At the initial qualitative phase, the content analysis was performed in several steps. First, the downloaded posts and replies were read carefully to obtain an overview of the sample. Second, the primary intent or theme of the message was identified and the content of the messages were compared with the two categories of Cutrona and Suhr (1994): action-facilitated and nurturant support behavior codes. Once an utterance was categorized under one of the two main categories, it was further matched to each of the specific codes detailed in Cutrona and Suhr (1992) (i.e., advise, sympathy). Since the purpose of the study was to identify specific patterns in the data that might validate or extend an existing theory, a direct approach to content analysis was used (Hsieh & Shannon, 2005). Direct content analysis is a deductive method that seeks to retest existing models or concepts in a new context (Elo & Kyngäs, 2008) in which the analysis of the data is initiated by identifying key concepts or variables as initial coding categories (Potter & Levine-Donnerstein, 1996). The analysis of the data was carried out until saturation was reached, i.e., “when no new information seems to emerge during coding, when no new properties, dimensions, conditions, actions/interactions, or consequences are seen in the data” (Strauss & Corbin, 1998, p. 136). Because the study is exploratory and does not aim to be statistically representative of all health online communities, the researcher used Miles and Huberman's (1994) check coding advice (p. 65). The researcher strengthened the validity of the coding by repeatedly check coding the same data; this involved a code and recode process until the initial coding was fully refined and no more anomalies appeared in the data. After the category scheme was finalized, the percentages of each category in the two samples were calculated separately. In the second phase of 1 2
http://www.psychforums.com/obsessive-compulsive/ http://www.dailystrength.org/c/Obsessive-Compulsive-Disorder-OCD/advice
The content analysis of the posts sample showed that information was elicited using the following action-facilitated codes: Asking for suggestion or advice Has anybody heard of a psychotropic drug that gives you the effect of marijuana? Requesting experiential knowledge So my fear is I know that human beings need sleep and I can't wait months or a year before I can go to sleep again, I will eventually die from not sleeping. The human body cannot survive long on sleep deprivation. I'”m really afraid my ocd is going to cause me to die. Has anyone ever had a fear of ocd keeping them from sleeping for a specific period of time but they were able to beat it. Any feedback would be helpful I'”m extremely freaked out and scared to death. Please if anyone has any helpful input I would love to hear it. Thanks so much. The content analysis of the posts sample showed posters disclosed personal information as a way to elicit nurturant support from the members of the group. Self-disclosure I don't know how to control this, any ache, or restriction starts me checking and cracking my neck, its automatic. When I catch myself I try to stop but I just can't let it go. I'”m on 40 mg prozac and it isn't doing anything, my dr put me on valium and I'”m going through it fast and it isn't helping much. I can't even look at myself in the mirror anymore, I don't want to be around anyone because I am ashamed and feel like I'”m a crazy person. I'”m lost and I don't know what to do. I'”m looking for a therapist but I can never get in to see one. The data analysis of the replies revealed both action-facilitated and nurturant support behavior codes proposed by Cutrona and Suhr (1992, 1994). The group users used the following behavior codes to offer information. Providing suggestion or advice In terms of the hoarding, if you would be open to it this is something that has helped others I know - ask a trusted friend or family member (one who knows you well enough to be able to discern what's actually important to you) to come in and take several trash bags of “things,” whether it's clothing, figurines, random items, etc. Make sure that you're not present when they're doing this (very important). The person should keep the bags for four to six months, and if you don't actively look for or need any of the things that they took, the bags are donated or the items sold. Referral it's ocd if you think you HAVE to do it or else something really bad will happen to you or others if you DON'T type your fingers. To better understand it, you could go to this site “www.ocfoundation.org/” I wish you all the best! Situation appraisal I agree, the fact that you say it keeps you awake at nite, and that it “starts all over” makes it sound like OCD. If it were just a habit, I think
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you could just say, Okay, this is annoying, and I'”m gonna stop. I think that's the big difference. Teaching Those thoughts happen to everyone! That is what I learned from psychiatrists who specialize in OCD. The difference between us OCDers and the rest of the population is that when we have a thought like seeing our child falling down the stairs we “place significant value and importance on the thought”—our brains send signals to our bodies that there is real danger and then we feel the fear and that reinforces to our minds that there is a very real danger, when in fact it was just a thought. The same thought that anyone else has—it's just that “normal” people either ignore the thought or think “that's weird” and then turn their attention to another thought. Users also used the following nurturant support behavior codes to offer emotional support in their replies. Empathy …When I was pregnant for the first time, my OCD was the worst I had ever experienced, I could barely get through the day! (Hormones and OCD make quite a mix, don't they?) That is actually the time when I first got therapy and started opening up about it, because I felt like I couldn't take it anymore. It will go back to normal, whatever your “normal” OCD is like. If you aren't in therapy, I strongly recommend it, it helped me SO much, especially at that time. Encouragement This road is very long and hard, but there are many, many people on the same journey. I hope your new counseling goes well, and if it doesn't, try, try, again. I think Jerrys' advice is spot on. You are probably one of the strongest people you will ever meet, you have to be. Oh, and the crying will get better! Sympathy Hey just read your story, not a very nice form of OCD. Urges are a strange one I have gotten them all the time but they never happen. Challenge them, i.e. go out where lots of people are and walk by them. nothing happens. once the scary bit is over when you finally realize these urges don't mean im going to do anything, you can kinda find them funny. Im real sorry about your cousin, and I hope you can get your life back on track.
Table 2 Percentages of occurrences for each category. % Action-facilitating support behavior codes In the posts Asking for a suggestion or advice Request for experiential knowledge In the replies Providing suggestion or advice Referral Situation appraisal Teaching Nurturant support behavior codes In the posts Self-disclosure In the replies Empathy Encouragement Sympathy
47.7 44.7 57.8 17.6 47.7 11
73.8 73.3 28.6 16.6
After the content analysis was done the percentages of occurrences for each category were calculated. These percentages are presented in Table 2. Table 2 shows that posters asked for information as advice or experiential knowledge and disclosed personal information to seek emotional support. Also, members of the group provided information in their replies mostly as advise suggestion and showed empathy as a way to provide emotional support. In the first phase of the statistical analysis the posts and the replies were categorized into two action-facilitated and nurturant support categories. Descriptive statistical analysis of the posts revealed the following: 163 (81.5%) requested nurturant support and 152 (76%) elicit action-facilitated support. As for the replies to the posts, 149 (74.5%) offered nurturant support and 141(70%) provided action-facilitated support. Shapiro–Wilk analyses were conducted in order to explore whether the dependent variables were normality distributed. No normality distributions were found in all the dependent variables. Therefore, parametric tests were conducted. 5.2. Number of occurrences of social support behavior codes in the posts A Friedman analysis was conducted to identify which of the social support behavior codes had the highest number of occurrences in the posts. The independent variable was the type of behavior code (self-disclosure, similar experiences, and advise) and the dependent variable was the number of occurrences for each behavior code (0 = no occurrence, 1 = occurrence). There was a significant difference between the three behavior codes χ2 (2) = 34.49, p b 0.001. Wilcoxon analyses conducted to identify the differences between the three behavior codes revealed that the number of occurrences for self-disclosure (mean rank = 2.29, M = 0.73, SD = 0.44) was significantly higher than the number of occurrences for similar experiences (mean rank = 1.86, M = 0.44, SD = 0.50) and advise (mean rank = 1.84, M = 0.49, SD = 0.82) behavior codes (Z = − 4.58, p b 0.001 and Z = −5.56, p b 0.001, respectively). 5.3. Number of occurrences of social support behavior codes in the replies A Friedman analysis was conducted to identify which of the social support behavior codes had the highest number of occurrences in the replies. The independent variable was the type of behavior code, that is, informational (suggested action, referral, situation appraisal, and teaching) or emotional (sympathy, empathy, encouragement) and the dependent variable was the number of occurrences for each behavior code. There was a significant difference in the number of occurrences between the four behavior codes χ2 (3) = 110.14, p b 0.001. Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for suggested action (mean rank = 2.87, M = 0.71, SD = 0.88) was significantly higher than the number of occurrences for referral (mean rank = 2.20, M = 0.20, SD = 0.46) and teaching (mean rank = 2.08, M = 0.14, SD = 0.46) behavior codes (Z = − 6.35, p b 0.001 and Z = − 7.19, p b 0.001, respectively). Moreover, the number of occurrences for situation appraisal (mean rank = 2.86, M = 0.68, SD = 0.89) was significantly higher than the number of occurrences for referral (mean rank = 2.20, M = 0.20, SD = 0.46) and teaching (mean rank = 2.08, M = 0.14, SD = 0.46) behavior codes (Z = − 6.41, p b 0.001 and Z = − 6.94, p b 0.001, respectively). There was a significant difference between the three emotional behavior codes in the number of occurrences (χ2 (2) = 156.11, p b 0.001). Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for empathy (mean rank = 2.57, Mean = 1.30, SD = 1.26) was significantly higher than the number of occurrences for encouragement
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(mean rank = 1.80, M = 0.37, SD = 0.67), and sympathy (mean rank = 1.63, M = 0.20, SD = 0.52) behavior codes (Z = − 8.66, p b 0.001 and Z = −9.64, p b 0.001, respectively). Also, the number of occurrences for encouragement were significantly higher than for sympathy (Z = −3.00, p b 0.01). When comparing the three behavior codes with the highest number of occurrences (empathy, suggested action and situation appraisal) using a Friedman test, a significant difference was found between the three (χ2 (2) = 43.30, p b 0.001.) Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for empathy was comparable to the number of occurrences for suggested action and situation appraisal (Z = − 5.82, p b 0.001 and Z = − 5.76, p b 0.001, respectively). 6. Discussion This study examined the different ways by which social support was requested and offered in two OCD related online health communities. Findings show that users of these communities used action-facilitated as well as nurturant social support behavior codes to exchange information. Results from the content analysis in this study parallels Coursaris and Liu's (2009) and Perron's (2002) findings that revealed that the information which was exchanged displayed three different action facilitated behavior codes. Advice was requested and provided, referrals pointed readers to new information sources, situation appraisals provided a renewed outlook to the poster's situation, and answers were given to questions asking for factual information about the disorder (conforming to the teaching behavior code). Both textual and statistical findings revealed two behavior codes for requesting information in the posts that did not exist in Cutrona and Suhr's (1992, 1994) original schemes and that are apparently characteristics of online environments. These two behavior codes (self-disclosure and requesting experiential knowledge) could be a result of the users perceiving these online environments as non-threatening and empathic places in which they can express themselves freely trying to reach an understanding of their illness through writing (Barak et al., 2008). Echoing findings from prior studies (Bronstein, 2014; Coursaris & Liu, 2009; Eichhorn, 2008; Winzelberg, 1997), users of the OCD online health communities disclose personal and intimate information about their illness as a way to elicit information from the group. These were direct requests such as: “Has anyone gone through something similar?” Or indirect request in the form of “Why do I do these things and how can I stop? Should I stop?” Through writing and self-disclosure, posters explore experiences, name fears, obtain a sense of meaning, and get a sense of relief (Barak et al., 2008; Bronstein, 2014; Guo & Goh, 2014; Ko & Chen, 2009; Savolainen, 2010). These behaviors are especially important for users suffering from health issues that bring them to conceal their identity (Bronstein, 2014; Perron, 2002; Tanis, 2008). The second behavior code revealed in the findings from the posts is the need for experiential knowledge; posts in which participants of the OCD online health communities asked other members for informal information about their experiences with the illness. Past studies have also shown that users of online health communities found informal information on social networks useful and relevant (Sudau et al., 2014) because it is formulated in their “own language” (van Uden-Kraan et al., 2008) and comes from “experiential experts” who provide a deeper understanding of the illness a well as emotional support (Perron, 2002; Tanis, 2008). Kummervold et al. (2002) observed that most users of a mental health forum looked for experiential knowledge from their peers on how to cope with the disease and its consequences. However, not all studies that examined online health communities support this need for experiential knowledge or present it in positive light. van Uden-Kraan et al. (2008) stated that participating in peer support groups can also have negative consequences, such as an increase in fear, uncertainty or depression when other participants express too
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many negative feelings, or when others in the group have other experiences than you do or do not understand yours. Coulson et al. (2007) found that in an online group dealing with Hutchinson's Disease, most of the site contained mostly informational support in the form of highly technical or factual genetic information about the disease. The behavior code most frequently used in the replies was empathy, a nurturant social support behavior code in which the replier discloses personal information as a way to show support and understanding. In the majority of the replies, empathy was used to express understanding of the situation, in most cases through the disclosure of personal information and experiences on the part of the individual replying to the initial post. Perron (2002) found that for caretakers of people with mental illnesses recognizing common experiences and offering words of support were a substitute for offering actual solutions. The use of empathy as a support behavior code in this study concurs with other studies that found that by helping others through self-disclosure people feel useful, empowered, and boost their self-esteem (Guo & Goh, 2014) and they regain a sense of control over their lives (van Uden-Kraan et al., 2008). This finding does not concur with Eichhorn's (2008) study which stated that in an online health community dealing with eating disorders informational support was provided more frequently than other types of support. In the present research, the higher frequency of use of emotional support behavior codes revealed in the posts and in the replies could be a result of the need to confront mental health challenges such as OCD. Users of the OCD online health communities perceived these sites as secure venues for emotional support and experiential knowledge from people that were struggling with the same symptoms. Emotion focused behavior codes were more frequently used because they were directed at “regulating emotional response to the problem”, by lessening emotional distress, while informational behavior codes, which are problem focused, were directed at “managing or altering the problem causing the stress” (Cutrona & Suhr, 1992, p. 156). Further research should explore the use of support behavior codes in different online health communities to identify possible differences between the groups. In addition, it will be interesting to triangulate content analysis results with primary data from in-depth interviews or surveys that will validate the interpretation given to the data analyzed in this study. 6.1. Limitations The study has a number of limitations. First, the two online health communities included in the sample were not chosen randomly so these findings are only applicable to the two sites examined and cannot be generalized to all OCD groups on the Internet. Second, the data were collected solely from people who are Internet users and who participated in an online group, hence, the results presented are not representative of other individuals who struggle with OCD but are not Internet users or do not participate in online health communities about the disorder. Third, to respect the users' anonymity, no demographic data were collected on the users of the group so the study did not account for those users with multiple aliases or users that might have posted multiple messages. 7. Conclusion Findings from the study reflect Davidson, Pennebaker, and Dickerson (2000) statement that “the experience of illness is a profoundly social one. Suffering elicits intense emotions and the desire to talk to others” (p. 205). The Internet has become a significant social sphere for people dealing with health concerns by providing them with a secure venue in which to vent their struggles, receive invaluable personal information that cannot be obtained from other sources, feel less alone in their coping with the disease, and get a sense of empowerment and purpose by helping others. These supportive interactions are shaped by a sense of camaraderie, based on the perception that people
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who do not suffer from the disease are unable to understand their world and that relevant information must come from those who share the same experiences.
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Journal of Health Psychology, 16(2), 236–248. Fox, S., & Purcell, K. (2010). Social media and health. Washington, DC: Pew Internet Project (Retrieved from http://www.pewinternet.org/Reports/2010/Chronic-Disease/Part-3/ Online-support-groups.aspx). Giles, D. C., & Newbold, J. (2013). ‘Is this normal?’ The role of category predicates in constructing mental illness online. Journal of Computer-Mediated Communication, 18(4), 476–490. Guo, Y., & Goh, D. H. L. (2014). “I have AIDS”: Content analysis of postings in HIV/AIDS support group on a Chinese microblog. Computers in Human Behavior, 34, 219–226. Hlebec, V., Manfreda, K. L., & Vehovar, V. (2006). The social support networks of Internet users. New Media & Society, 8(1), 9–32. Hsieh, H. F., & Shannon, S. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. Hughes, S., & Cohen, D. (2011). Can online consumers contribute to drug knowledge? 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Ko, H. C., & Chen, T. K. (2009). Understanding the continuous self-disclosure of bloggers from the cost-benefit perspective. Proceedings of the Conference on Human System Interactions, 2, 520–527. Kummervold, P. E., Gammon, D., Bergvik, S., Johnsen, J. A. K., Hasvold, T., & Rosenvinge, J. H. (2002). Social support in a wired world: use of online mental health forums in Norway. Nordic journal of psychiatry, 56(1), 59–65. Kummervold, P. E., Chronaki, C. E., Lausen, B., Prokosch, H. U., Rasmussen, J., Santana, S., & Wangberg, S. C. (2008). eHealth trends in Europe 2005–2007: A population-based survey. Journal of Medical Internet Research, 10(4) Retrieved from http://www.ncbi. nlm.nih.gov/pmc/articles/PMC2629359/. Lasker, J. N., Sogolow, E. D., & Sharim, R. R. (2005). The role of an online community for people with a rare disease: Content analysis of messages posted on a primary biliary cirrhosis mailing list. Journal of Medical Internet Research, 7(1) Retrieved from http:// www.ncbi.nlm.nih.gov/pmc/articles/PMC1550634/ Leckman, J. F., Grice, D. E., Boardman, J., Zhang, H., Vitale, A., Bondi, C., & Pauls, D. L. (1997). Symptoms of obsessive-compulsive disorder. American Journal of Psychiatry, 154(7), 911–917. Lemire, M., Paré, G., Sicotte, C., & Harvey, C. (2008). Determinants of Internet use as a preferred source of information on personal health. International Journal of Medical Informatics, 77, 723–734. Malik, S. H., & Coulson, N. S. (2010). Coping with infertility online: An examination of selfhelp mechanisms in an online infertility support group. Patient Education and Counseling, 81(2), 315–318. Mazzoni, D., & Cicognani, E. (2014). Sharing experiences and social support requests in an Internet forum for patients with systemic lupus erythematosus. Journal of Health Psychology, 19, 689–696. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. London, UK: Sage. Perron, B. (2002). Online support for caregivers of people with a mental illness. Psychiatric Rehabilitation Journal, 26(1), 70–77. Petrič, G., & Petrovčič, A. (2014). Individual and collective empowerment in online communities: The mediating role of communicative interaction in web forums. The Information Society, 30(3), 184–199. Potter, W. J., & Levine-Donnerstein, D. (1996, May). Content analysis methodology: Assessing reliability for multiple coders. Paper presented at the Annual Meeting of the International Communication Association, Chicago, Illinois. May 23–27, 1996. Preece, J. (1999). Empathic communities: Balancing emotional and factual communication. Interacting with Computers, 12(1), 63–77. Riley, S. E. (2013). Expressions of concern and social support about reproductive care for young women on an online message board. Theses and Dissertations—Communication. Paper 19 Retrieved from http://uknowledge.uky.edu/comm_etds/19. Rodgers, S., & Chen, Q. (2005). Internet community group participation: Psychosocial benefits for women with breast cancer. Journal of Computer-Mediated Communication, 10(4) Retrieved from http://onlinelibrary.wiley.com/doi/10.1111/j. 1083-6101.2005.tb00268.x/full. Savolainen, R. (2010). Dietary blogs as sites of informational and emotional support. Information Research, 15(4) paper 438. Retrieved from http://InformationR.net/ir/ 15-4/paper438.html. Savolainen, R. (2011). Requesting and providing information in blogs and internet discussion forums. Journal of Documentation, 67, 863–886. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. London, UK: Sage. Sudau, F., Friede, T., Grabowski, J., Koschack, J., Makedonski, P., & Himmel, W. (2014). Sources of information and behavioral patterns in online health forums: Observational study. Journal of Medical Internet Research, 16(1) Retrieved from http://www.ncbi. nlm.nih.gov/pmc/articles/PMC3958625/. Tanis, M. (2008). Health-related on-line forums: What's the big attraction? Journal of Health Communication, 13, 698–714. van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18, 405–417. Vayreda, A., & Antaki, C. (2009). Social support and unsolicited advice in a bipolar disorder online forum. Qualitative Health Research, 19, 931–942. Wikgren, M. (2003). Everyday health information exchange and citation behaviour in Internet discussion groups. The New Review of Information Behaviour Research, 4(1), 225–239. Winzelberg, A. (1997). The analysis of an electronic support group for individuals with eating disorders. Computers in Human Behavior, 13, 393–407. Wright, K. B., & Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8(1), 39–54. Jenny Bronstein received her PhD in 2006 from the Department of Information Sciences at Bar Ilan University, Israel. Her research interests are in library and information science education and professional development, self-presentation and self-disclosure on different social platforms, and information seeking behavior. Dr. Bronstein has published in journals such as Information Research, Journal of the Association for Information Science & Technology, Library & Information Science Research, and Online Information Review. She teaches courses in information retrieval, information behavior, academic libraries, and business information at the Information Science Department at Bar-Ilan University.
Contents lists available at ScienceDirect
Library & Information Science Research
An examination of social and informational support behavior codes on the Internet: The case of online health communities Jenny Bronstein Department of Information Science, Bar-Ilan University, Ramat Gan, 52900, Israel
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Article history: Received 30 August 2015 Received in revised form 30 March 2016 Accepted 18 January 2017 Available online 6 February 2017
1. Introduction Online forums have been defined as “a group of individuals with a common interest or a shared purpose, whose interactions are governed by policies in the form of rules, rituals, or protocols; who have ongoing and persistent interactions; who use electronic communication as the primary form of interaction to support and mediate social interaction and facilitate a sense of togetherness” (Rodgers & Chen, 2005). Online forums have become important sources of information because (a) being inexpensive they minimize social class distinctions because (Winzelberg, 1997); (b) they allow people to disclose health information with less risk than face-to-face communication because of the Internet's inherent invisibility and anonymity (Giles & Newbold, 2013; Kummervold et al., 2008); and (c) their asynchronous nature allows users to plan their messages, to manage their emotions and to disconnect from the group after posting a personal or emotional message (Barak, Boniel-Nissim, & Suler, 2008; Eichhorn, 2008; Perron, 2002). Online health communities are a specialized subset of online forums that provide their users with valuable informal information in the form of personalized health experiences and emotional support and empower users to manage their illness (El Morr, Cole, & Perl, 2014). In many cases they function as an intermediate step between individual coping and professional therapy (Chen, 2014; Winzelberg, 1997). These characteristics make online health communities an influential and unique source of information (Bronstein, 2014; Sudau et al., 2014). These communities are used by 8% of Internet users living with chronic disease (Fox & Purcell, 2010). 2. Problem statement A central motive for participating in virtual health communities is seeking and providing informational and social support (Elwell, E-mail address: [email protected].
http://dx.doi.org/10.1016/j.lisr.2017.01.006 0740-8188/© 2017 Elsevier Inc. All rights reserved.
Grogan, & Coulson, 2011; Mazzoni & Cicognani, 2014; Riley, 2013; van Uden-Kraan et al., 2008). Users dealing with health concerns find in these sites empathic communities of people facing similar challenges (Preece, 1999). Because they transcend geographical and temporal constrains, virtual health communities have expanded users' social networks (Wright & Bell, 2003) allowing them more social choices when they engage in supportive interactions (Hlebec, Manfreda, & Vehovar, 2006). However, little is known about the specific social support exchanges in online health communities. By examining this issue, a better understanding can be achieved of the role that these online spaces play in health related information behavior and of the social role that has characterized the Internet in recent years. To close this gap, the current study explored the different types of social support requested and offered in the two virtual health communities dealing with obsessivecompulsive disorder (OCD). This exploration included identifying whether the support asked for and received was either informational or supportive in nature (Cutrona & Suhr, 1994) and then categorizing each utterance under a specific support behavior code (Cutrona & Suhr, 1992) and identifying which behavior code was used more frequently (i.e., had the highest number of occurrences) both in the posts and in the replies. Hence, the following research questions were examined: RQ1. Which type of social support behavior codes are used in OCD online health communities when requesting and offering social support? RQ2. Which is the most frequently used social support behavior codes in the posts in OCD online health communities? RQ3. Which is the most frequently used social support behavior code in the replies in OCD online health communities? 3. Literature review 3.1. Online health communities Online health communities have been studied extensively. Researchers have investigated the impact that these online resources have on dealing with critical or chronic diseases (Chang, 2009; Chen, 2014; Eichhorn, 2008; Guo & Goh, 2014; Johnston, Worrell, Di Gangi, & Wasko, 2013; Rodgers & Chen, 2005; Sudau et al., 2014), how often people use the online health communities looking for health information (Kummervold et al., 2008), which sources of information are used in online health communities (Rodgers & Chen, 2005; Sudau et al.,
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2014), which factors contribute or obstruct the use of the online health communities when searching for health information (Lemire, Paré, Sicotte, & Harvey, 2008), and how social support is requested and offered on these sites (Mazzoni & Cicognani, 2014; Riley, 2013). 3.2. Social support in virtual health communities Social support is defined by Burleson and MacGeorge (2002) as “verbal and nonverbal behavior produced with the intention of providing assistance to others perceived as needing that aid” (p. 374). Support acts as a structure to help individuals manage their uncertainty about a situation (Apker & Ray, 2000). By managing the uncertainty, individuals feel more in control, better informed and more actively involved. Participation in a virtual health community is one way to reduce uncertainty and to develop coping mechanisms (Riley, 2013). Prior studies that investigated the use of different online environments in health management issues have implemented Cutrona and Suhr's (1992, 1994) behavior codes for social support. These studies have revealed that users of online health communities exchange factual and experiential information (Savolainen, 2010) as well as network links (Chang, 2009), disclose and share personal experiences as a form of social support (Coursaris & Liu, 2009), and offer tangible assistance to other members of the group (Coulson, Buchanan, & Aubeeluck, 2007). Other studies have examined the personal and social benefits that characterize participation in online health communities (Johnston et al., 2013). Participants in an online breast cancer group enjoyed informational and emotional support, experienced greater optimism toward the illness and improved their stress coping skills (Rodgers & Chen, 2005; Tanis, 2008). Women suffering from infertility provided emotional support to other community members in the form of empathy and sharing of personal experiences as well as the provision of practical information and advice (Malik & Coulson, 2010). Three studies dealing with breast cancer (Colineau & Paris, 2010), eating disorders (Eichhorn, 2008) and AIDS (Guo & Goh, 2014) also found that emotional support was one of the major roles of online health communities when dealing with an illness. Emotional support can take many forms, such as encouragement, validation, and reminders of presence (Chuang & Yang, 2012), or peer support and the expression of positive emotions (Lasker, Sogolow, & Sharim, 2005; Perron, 2002). Johnson and Ambrose (2006) asserted that the emotional support provided in the forums developed “a sense of identity or the camaraderie that members feel toward one another” and that the sharing of personal experiences with others suffering from the same disease helped users of online health communities to comprehend their treatments to a greater extent (p. 111). Because of the anonymity facilitated in computer-mediated communications, online health communities provide a safe environment for self-disclosure for people suffering from health challenges conditions who need support from others (Coursaris & Liu, 2009; Tanis, 2008; Wright & Bell, 2003) by lowering the threshold for the disclosure and discussion of their illnesses (Kummervold et al., 2008). In a study about help-seeking mechanisms used by adults suffering from mental health issues, DeAndrea (2015) claimed that as fear of social stigma increases so does the preference of using online health communities over other forms of help. Social support can also come in the form of information or experiential knowledge; prior studies show that online health communities have become an important source of health information and network links (Chang, 2009; Sudau et al., 2014). Studies have found that these online spaces fill the need for factual or practical information about disease, medication, treatment and coping skills (Kummervold et al., 2008; Mazzoni & Cicognani, 2014) and were regarded “particularly valuable” (Dolce, 2011, p. 358) because they complemented the information received from care providers and provided users with support, and a feeling of empowerment (Dolce, 2011). Informational requests could be presented as direct questions (Wikgren, 2003), but studies have also found that when posting a question on an online health community site users often are looking for more than factual information since the strength of these sites is in supporting the sharing of experiential
and practice knowledge (Bronstein, 2014; Hughes & Cohen, 2011; Savolainen, 2010, 2011). Furthermore, sharing of personal experiences can lead to a collective empowerment of the online community (Petrič & Petrovčič, 2014). As Bronstein (2014) stated, users look for “experiential information that makes sense because it is based on past experiences that make it relevant to their everyday problems and concerns regarding their disorder”. 3.3. Obsessive compulsive disorder (OCD) Obsessive-compulsive disorder is characterized by intrusive obsessional thoughts and ritualistic compulsive behaviors that could become a distressing and disabling condition (Black & Blum, 1992). These obsessions or compulsions may include checking or cleaning, hoarding, obsessions concerning symmetry or exactness, ordering and arranging obsessions and compulsions, and religious obsessions. This symptomatic disparity can result in two people suffering from obsessive-compulsive disorder that present totally different symptoms, this disparity can make the diagnosis difficult (Leckman et al., 1997). OCD is a common disorder; the U.S. National Institutes of Health (2013) reports that about 1% of the adult population suffers from some kind of obsessive compulsion. 4. Methods 4.1. Conceptual framework The present study draws on Cutrona and Suhr's (1992, 1994) two coding schemes for social support developed to aid married couples in dealing with stressful events. Cutrona and Suhr (1994) categorized social support behavior codes into two major categories: (1) actionTable 1 Social support behavior codes. Action-facilitating support behavior codes In the posts Asking for a suggestion or advice Request for experiential knowledge
Requests or elicits information some users asked the group directly for advice or factual information Requests or elicits others users to share with them their personal experiences (Bronstein, 2014; van Uden-Kraan et al., 2008). This behavior code did not appear in Cutrona and Suhr's (1992) scheme.
In the replies Providing suggestion or advice Referral Situation appraisal Teaching Nurturant support behavior codes In the posts Self-disclosure
Offers ideas or suggested actions Provides additional sources of information Provides a reassessment of the situation (as a personal opinion) Provides detailed factual information
Posters disclose personal information as an expression of need for support to elicit emotional support from the community (Eichhorn, 2008; Rodgers & Chen, 2005). This behavior code did not appear in Cutrona and Suhr's (1992) scheme.
In the replies Empathy
Encouragement Sympathy
Expresses understanding of the situation by disclosing an experiential knowledge in the form of a personal situation as a way to communicate understanding Provides the recipient with hope and confidence Expresses sorrow or regret for the recipient's situation
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facilitating support intended to assist the individual in solving problems and involving informational and tangible support, and (2) nurturant support that encompasses efforts to comfort or console, without direct efforts to solve the problem. Table 1 details the coding scheme used in the data analysis.
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the analysis, data were analyzed statistically to find the number of occurrences for each behavior code. 5. Findings 5.1. Textual and descriptive findings
4.2. Data collection and analysis Data were collected from the following online health communities: 1. Psychforums1 2. Daily Strength2 These two sites were selected based on the following criteria: 1. They are user led—not owned or constructed by medical professionals or institutions (Giles & Newbold, 2013). 2. They are public online spaces, not password protected. Hence, users of these groups are aware that the information they post is publicly available to all Internet users (Vayreda & Antaki, 2009). A sample of 634 items, consisting of 200 posts and 434 corresponding replies, was collected; this included all of the messages posted on both online health communities from October to December 2013. The individual message posting (whether a post or a reply) was analyzed to examine the different expressions of social support within the unit, and each utterance was categorized separately. Although most studies assign a single code to each post, the present study opted for a multiple codes coding scheme since “assigning multiple codes may more accurately reflect what is going on,” (Chen, 2014, p. 122). That is, because a post or a reply could convey social support in various ways and present several social support codes, these information units were divided into utterances that conveyed a single message and these utterances were taken as the minimal information unit for analysis. The data analysis consisted first of a qualitative phase that categorized the data collected; this was then complemented by quantitative analysis. At the initial qualitative phase, the content analysis was performed in several steps. First, the downloaded posts and replies were read carefully to obtain an overview of the sample. Second, the primary intent or theme of the message was identified and the content of the messages were compared with the two categories of Cutrona and Suhr (1994): action-facilitated and nurturant support behavior codes. Once an utterance was categorized under one of the two main categories, it was further matched to each of the specific codes detailed in Cutrona and Suhr (1992) (i.e., advise, sympathy). Since the purpose of the study was to identify specific patterns in the data that might validate or extend an existing theory, a direct approach to content analysis was used (Hsieh & Shannon, 2005). Direct content analysis is a deductive method that seeks to retest existing models or concepts in a new context (Elo & Kyngäs, 2008) in which the analysis of the data is initiated by identifying key concepts or variables as initial coding categories (Potter & Levine-Donnerstein, 1996). The analysis of the data was carried out until saturation was reached, i.e., “when no new information seems to emerge during coding, when no new properties, dimensions, conditions, actions/interactions, or consequences are seen in the data” (Strauss & Corbin, 1998, p. 136). Because the study is exploratory and does not aim to be statistically representative of all health online communities, the researcher used Miles and Huberman's (1994) check coding advice (p. 65). The researcher strengthened the validity of the coding by repeatedly check coding the same data; this involved a code and recode process until the initial coding was fully refined and no more anomalies appeared in the data. After the category scheme was finalized, the percentages of each category in the two samples were calculated separately. In the second phase of 1 2
http://www.psychforums.com/obsessive-compulsive/ http://www.dailystrength.org/c/Obsessive-Compulsive-Disorder-OCD/advice
The content analysis of the posts sample showed that information was elicited using the following action-facilitated codes: Asking for suggestion or advice Has anybody heard of a psychotropic drug that gives you the effect of marijuana? Requesting experiential knowledge So my fear is I know that human beings need sleep and I can't wait months or a year before I can go to sleep again, I will eventually die from not sleeping. The human body cannot survive long on sleep deprivation. I'”m really afraid my ocd is going to cause me to die. Has anyone ever had a fear of ocd keeping them from sleeping for a specific period of time but they were able to beat it. Any feedback would be helpful I'”m extremely freaked out and scared to death. Please if anyone has any helpful input I would love to hear it. Thanks so much. The content analysis of the posts sample showed posters disclosed personal information as a way to elicit nurturant support from the members of the group. Self-disclosure I don't know how to control this, any ache, or restriction starts me checking and cracking my neck, its automatic. When I catch myself I try to stop but I just can't let it go. I'”m on 40 mg prozac and it isn't doing anything, my dr put me on valium and I'”m going through it fast and it isn't helping much. I can't even look at myself in the mirror anymore, I don't want to be around anyone because I am ashamed and feel like I'”m a crazy person. I'”m lost and I don't know what to do. I'”m looking for a therapist but I can never get in to see one. The data analysis of the replies revealed both action-facilitated and nurturant support behavior codes proposed by Cutrona and Suhr (1992, 1994). The group users used the following behavior codes to offer information. Providing suggestion or advice In terms of the hoarding, if you would be open to it this is something that has helped others I know - ask a trusted friend or family member (one who knows you well enough to be able to discern what's actually important to you) to come in and take several trash bags of “things,” whether it's clothing, figurines, random items, etc. Make sure that you're not present when they're doing this (very important). The person should keep the bags for four to six months, and if you don't actively look for or need any of the things that they took, the bags are donated or the items sold. Referral it's ocd if you think you HAVE to do it or else something really bad will happen to you or others if you DON'T type your fingers. To better understand it, you could go to this site “www.ocfoundation.org/” I wish you all the best! Situation appraisal I agree, the fact that you say it keeps you awake at nite, and that it “starts all over” makes it sound like OCD. If it were just a habit, I think
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you could just say, Okay, this is annoying, and I'”m gonna stop. I think that's the big difference. Teaching Those thoughts happen to everyone! That is what I learned from psychiatrists who specialize in OCD. The difference between us OCDers and the rest of the population is that when we have a thought like seeing our child falling down the stairs we “place significant value and importance on the thought”—our brains send signals to our bodies that there is real danger and then we feel the fear and that reinforces to our minds that there is a very real danger, when in fact it was just a thought. The same thought that anyone else has—it's just that “normal” people either ignore the thought or think “that's weird” and then turn their attention to another thought. Users also used the following nurturant support behavior codes to offer emotional support in their replies. Empathy …When I was pregnant for the first time, my OCD was the worst I had ever experienced, I could barely get through the day! (Hormones and OCD make quite a mix, don't they?) That is actually the time when I first got therapy and started opening up about it, because I felt like I couldn't take it anymore. It will go back to normal, whatever your “normal” OCD is like. If you aren't in therapy, I strongly recommend it, it helped me SO much, especially at that time. Encouragement This road is very long and hard, but there are many, many people on the same journey. I hope your new counseling goes well, and if it doesn't, try, try, again. I think Jerrys' advice is spot on. You are probably one of the strongest people you will ever meet, you have to be. Oh, and the crying will get better! Sympathy Hey just read your story, not a very nice form of OCD. Urges are a strange one I have gotten them all the time but they never happen. Challenge them, i.e. go out where lots of people are and walk by them. nothing happens. once the scary bit is over when you finally realize these urges don't mean im going to do anything, you can kinda find them funny. Im real sorry about your cousin, and I hope you can get your life back on track.
Table 2 Percentages of occurrences for each category. % Action-facilitating support behavior codes In the posts Asking for a suggestion or advice Request for experiential knowledge In the replies Providing suggestion or advice Referral Situation appraisal Teaching Nurturant support behavior codes In the posts Self-disclosure In the replies Empathy Encouragement Sympathy
47.7 44.7 57.8 17.6 47.7 11
73.8 73.3 28.6 16.6
After the content analysis was done the percentages of occurrences for each category were calculated. These percentages are presented in Table 2. Table 2 shows that posters asked for information as advice or experiential knowledge and disclosed personal information to seek emotional support. Also, members of the group provided information in their replies mostly as advise suggestion and showed empathy as a way to provide emotional support. In the first phase of the statistical analysis the posts and the replies were categorized into two action-facilitated and nurturant support categories. Descriptive statistical analysis of the posts revealed the following: 163 (81.5%) requested nurturant support and 152 (76%) elicit action-facilitated support. As for the replies to the posts, 149 (74.5%) offered nurturant support and 141(70%) provided action-facilitated support. Shapiro–Wilk analyses were conducted in order to explore whether the dependent variables were normality distributed. No normality distributions were found in all the dependent variables. Therefore, parametric tests were conducted. 5.2. Number of occurrences of social support behavior codes in the posts A Friedman analysis was conducted to identify which of the social support behavior codes had the highest number of occurrences in the posts. The independent variable was the type of behavior code (self-disclosure, similar experiences, and advise) and the dependent variable was the number of occurrences for each behavior code (0 = no occurrence, 1 = occurrence). There was a significant difference between the three behavior codes χ2 (2) = 34.49, p b 0.001. Wilcoxon analyses conducted to identify the differences between the three behavior codes revealed that the number of occurrences for self-disclosure (mean rank = 2.29, M = 0.73, SD = 0.44) was significantly higher than the number of occurrences for similar experiences (mean rank = 1.86, M = 0.44, SD = 0.50) and advise (mean rank = 1.84, M = 0.49, SD = 0.82) behavior codes (Z = − 4.58, p b 0.001 and Z = −5.56, p b 0.001, respectively). 5.3. Number of occurrences of social support behavior codes in the replies A Friedman analysis was conducted to identify which of the social support behavior codes had the highest number of occurrences in the replies. The independent variable was the type of behavior code, that is, informational (suggested action, referral, situation appraisal, and teaching) or emotional (sympathy, empathy, encouragement) and the dependent variable was the number of occurrences for each behavior code. There was a significant difference in the number of occurrences between the four behavior codes χ2 (3) = 110.14, p b 0.001. Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for suggested action (mean rank = 2.87, M = 0.71, SD = 0.88) was significantly higher than the number of occurrences for referral (mean rank = 2.20, M = 0.20, SD = 0.46) and teaching (mean rank = 2.08, M = 0.14, SD = 0.46) behavior codes (Z = − 6.35, p b 0.001 and Z = − 7.19, p b 0.001, respectively). Moreover, the number of occurrences for situation appraisal (mean rank = 2.86, M = 0.68, SD = 0.89) was significantly higher than the number of occurrences for referral (mean rank = 2.20, M = 0.20, SD = 0.46) and teaching (mean rank = 2.08, M = 0.14, SD = 0.46) behavior codes (Z = − 6.41, p b 0.001 and Z = − 6.94, p b 0.001, respectively). There was a significant difference between the three emotional behavior codes in the number of occurrences (χ2 (2) = 156.11, p b 0.001). Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for empathy (mean rank = 2.57, Mean = 1.30, SD = 1.26) was significantly higher than the number of occurrences for encouragement
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(mean rank = 1.80, M = 0.37, SD = 0.67), and sympathy (mean rank = 1.63, M = 0.20, SD = 0.52) behavior codes (Z = − 8.66, p b 0.001 and Z = −9.64, p b 0.001, respectively). Also, the number of occurrences for encouragement were significantly higher than for sympathy (Z = −3.00, p b 0.01). When comparing the three behavior codes with the highest number of occurrences (empathy, suggested action and situation appraisal) using a Friedman test, a significant difference was found between the three (χ2 (2) = 43.30, p b 0.001.) Wilcoxon analyses conducted to identify the differences between the four behavior codes revealed that the number of occurrences for empathy was comparable to the number of occurrences for suggested action and situation appraisal (Z = − 5.82, p b 0.001 and Z = − 5.76, p b 0.001, respectively). 6. Discussion This study examined the different ways by which social support was requested and offered in two OCD related online health communities. Findings show that users of these communities used action-facilitated as well as nurturant social support behavior codes to exchange information. Results from the content analysis in this study parallels Coursaris and Liu's (2009) and Perron's (2002) findings that revealed that the information which was exchanged displayed three different action facilitated behavior codes. Advice was requested and provided, referrals pointed readers to new information sources, situation appraisals provided a renewed outlook to the poster's situation, and answers were given to questions asking for factual information about the disorder (conforming to the teaching behavior code). Both textual and statistical findings revealed two behavior codes for requesting information in the posts that did not exist in Cutrona and Suhr's (1992, 1994) original schemes and that are apparently characteristics of online environments. These two behavior codes (self-disclosure and requesting experiential knowledge) could be a result of the users perceiving these online environments as non-threatening and empathic places in which they can express themselves freely trying to reach an understanding of their illness through writing (Barak et al., 2008). Echoing findings from prior studies (Bronstein, 2014; Coursaris & Liu, 2009; Eichhorn, 2008; Winzelberg, 1997), users of the OCD online health communities disclose personal and intimate information about their illness as a way to elicit information from the group. These were direct requests such as: “Has anyone gone through something similar?” Or indirect request in the form of “Why do I do these things and how can I stop? Should I stop?” Through writing and self-disclosure, posters explore experiences, name fears, obtain a sense of meaning, and get a sense of relief (Barak et al., 2008; Bronstein, 2014; Guo & Goh, 2014; Ko & Chen, 2009; Savolainen, 2010). These behaviors are especially important for users suffering from health issues that bring them to conceal their identity (Bronstein, 2014; Perron, 2002; Tanis, 2008). The second behavior code revealed in the findings from the posts is the need for experiential knowledge; posts in which participants of the OCD online health communities asked other members for informal information about their experiences with the illness. Past studies have also shown that users of online health communities found informal information on social networks useful and relevant (Sudau et al., 2014) because it is formulated in their “own language” (van Uden-Kraan et al., 2008) and comes from “experiential experts” who provide a deeper understanding of the illness a well as emotional support (Perron, 2002; Tanis, 2008). Kummervold et al. (2002) observed that most users of a mental health forum looked for experiential knowledge from their peers on how to cope with the disease and its consequences. However, not all studies that examined online health communities support this need for experiential knowledge or present it in positive light. van Uden-Kraan et al. (2008) stated that participating in peer support groups can also have negative consequences, such as an increase in fear, uncertainty or depression when other participants express too
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many negative feelings, or when others in the group have other experiences than you do or do not understand yours. Coulson et al. (2007) found that in an online group dealing with Hutchinson's Disease, most of the site contained mostly informational support in the form of highly technical or factual genetic information about the disease. The behavior code most frequently used in the replies was empathy, a nurturant social support behavior code in which the replier discloses personal information as a way to show support and understanding. In the majority of the replies, empathy was used to express understanding of the situation, in most cases through the disclosure of personal information and experiences on the part of the individual replying to the initial post. Perron (2002) found that for caretakers of people with mental illnesses recognizing common experiences and offering words of support were a substitute for offering actual solutions. The use of empathy as a support behavior code in this study concurs with other studies that found that by helping others through self-disclosure people feel useful, empowered, and boost their self-esteem (Guo & Goh, 2014) and they regain a sense of control over their lives (van Uden-Kraan et al., 2008). This finding does not concur with Eichhorn's (2008) study which stated that in an online health community dealing with eating disorders informational support was provided more frequently than other types of support. In the present research, the higher frequency of use of emotional support behavior codes revealed in the posts and in the replies could be a result of the need to confront mental health challenges such as OCD. Users of the OCD online health communities perceived these sites as secure venues for emotional support and experiential knowledge from people that were struggling with the same symptoms. Emotion focused behavior codes were more frequently used because they were directed at “regulating emotional response to the problem”, by lessening emotional distress, while informational behavior codes, which are problem focused, were directed at “managing or altering the problem causing the stress” (Cutrona & Suhr, 1992, p. 156). Further research should explore the use of support behavior codes in different online health communities to identify possible differences between the groups. In addition, it will be interesting to triangulate content analysis results with primary data from in-depth interviews or surveys that will validate the interpretation given to the data analyzed in this study. 6.1. Limitations The study has a number of limitations. First, the two online health communities included in the sample were not chosen randomly so these findings are only applicable to the two sites examined and cannot be generalized to all OCD groups on the Internet. Second, the data were collected solely from people who are Internet users and who participated in an online group, hence, the results presented are not representative of other individuals who struggle with OCD but are not Internet users or do not participate in online health communities about the disorder. Third, to respect the users' anonymity, no demographic data were collected on the users of the group so the study did not account for those users with multiple aliases or users that might have posted multiple messages. 7. Conclusion Findings from the study reflect Davidson, Pennebaker, and Dickerson (2000) statement that “the experience of illness is a profoundly social one. Suffering elicits intense emotions and the desire to talk to others” (p. 205). The Internet has become a significant social sphere for people dealing with health concerns by providing them with a secure venue in which to vent their struggles, receive invaluable personal information that cannot be obtained from other sources, feel less alone in their coping with the disease, and get a sense of empowerment and purpose by helping others. These supportive interactions are shaped by a sense of camaraderie, based on the perception that people
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who do not suffer from the disease are unable to understand their world and that relevant information must come from those who share the same experiences.
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Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8(1), 39–54. Jenny Bronstein received her PhD in 2006 from the Department of Information Sciences at Bar Ilan University, Israel. Her research interests are in library and information science education and professional development, self-presentation and self-disclosure on different social platforms, and information seeking behavior. Dr. Bronstein has published in journals such as Information Research, Journal of the Association for Information Science & Technology, Library & Information Science Research, and Online Information Review. She teaches courses in information retrieval, information behavior, academic libraries, and business information at the Information Science Department at Bar-Ilan University.