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Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group Kimberly K. Walker

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School of Journalism Indiana, University School of Journalism Published online: 30 Oct 2013.

Click for updates To cite this article: Kimberly K. Walker (2014) Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group, Health Communication, 29:8, 773-781, DOI: 10.1080/10410236.2013.800830 To link to this article: http://dx.doi.org/10.1080/10410236.2013.800830

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Health Communication, 29: 773–781, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2013.800830

Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group Kimberly K. Walker Downloaded by [Nova Southeastern University] at 01:45 30 December 2014

School of Journalism Indiana University School of Journalism

There are currently many disease-specific groups on Facebook in which patients may take an active part (Greene, Choudhry, Kilabuk, & Shrank, 2011). Although uses and gratifications of patient-disease groups have begun to be identified for chronic diseases, rare diseases have been omitted, even though they collectively affect roughly 30 million people in the United States and 350 million people worldwide. This study is a content analysis of one Facebook rare disease patient group, the Thoracic Outlet Syndrome (TOS) Awareness group. All wall posts were recorded and content analyzed for cognitive and affective categories and subcategories between October 9, 2011 (date of site origin), and May 1, 2012. Analysis of cognitive needs indicated TOS patients used the site more to share information about their own TOS symptoms and journey with diagnosis than to seek information. Analysis of affective needs found patients were more likely to use the site to give support and encouragement to others than to express concerns and complaints. The complaints they did express were primarily related to their frustration with the general medical community’s perceived inability to diagnose and understand their disease or to question a specific doctor’s diagnosis/recommendation. Results point to needs specific to TOS patients that uses and gratifications research can help clarify.

Finding health information can be hard if you have a rare disease. Those patients often have to become experts themselves. Social media like Facebook make it easier for people with rare disorders to find each other and share that expertise. That’s helping patients and medical research. (Shute, 2012)

This quote expresses the opinion of a recent National Public Radio (NPR) investigative report about the importance of social media sites for people with rare diseases. The opinion has also been supported by research from the latest Pew Internet & American Life Project survey, which contained a special section that assessed rare disease individuals’ uses of the Internet (Tustin, 2010). Those survey results established that people affected by rare diseases used social media even more than those living with chronic conditions to “tap into the wisdom of their peer networks” and connect to others who have the same health condition (Fox, 2011, p. 11). The Pew findings are of significance because although there are many disease-specific support groups for rare Correspondence should be addressed to Kimberly K. Walker, School of Journalism, Indiana University School of Journalism, Indianapolis, IN 46202. E-mail: [email protected]

disease patients to connect with on the Internet, it is primarily chronic and common diseases that have benefited from content analysis of messages that can help identify gaps in patients needs and care. The inclusion of rare diseases in analysis should not be overlooked, as there are about 6,800 rare diseases in the United States that affect roughly 30 million people and 350 million people worldwide (NORD, 2012; Sanford Research, n.d). These patients face unique challenges that encourage use of patient support groups for both cognitive and affective reasons. First, because most patients diagnosed with a rare disease will not meet anyone face-to-face with the same disease, support groups may be the only way to connect with others who share their diagnosis (Rados, 2003). Second, rare disease individuals’ informational needs are great, as general knowledge, expertise, and awareness about these life-threatening and chronically debilitating diseases are scant, and individuals often search support groups for information about diagnosis, treatment, and prognosis (Jaffe, Zurynski, Beville, & Elliott, 2010). Third, because there are fewer physicians who are knowledgeable about the disease, it takes an average of 1 to 5 years to obtain diagnosis (Rados, 2003). Information

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acquired can empower them by helping them understand the disease in order to maintain hope during the long and often exasperating diagnosis process (Walker, 2012a).

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THORACIC OUTLET SYNDROME (TOS) Thoracic outlet syndrome (TOS) is a rare condition that shares many of the aforementioned challenges associated with rare diseases. It is a condition where the nerves, veins, arteries, or all, get compressed in the thoracic outlet (the space between the collarbone and first rib), causing symptoms that can range from mild tingling in the fingers to lifeand limb-threatening deep vein thrombosis (DVT), known as blood clots (Mayo Clinic, 2011). Three types of TOS are typically identified in the literature: neurogenic, venous, and arterial (Mayo Clinic, 2011). Almost all cases of TOS (95 to 98%) affect the brachial plexus. The other 2 to 5% affect vascular structures, such as the subclavian artery and vein (Boezaart et al., 2010). It affects roughly 8% of the population, with a female to male ratio of 4:1 (Boezaart et al., 2010). TOS is listed on the National Institutes of Health (NIH) website as a rare disease but was chosen for analysis because some believe it is becoming more prevalent due to breast implants, time on computers, and repetitive activities that put pressure on the chest, constricting blood vessels, nerves, or arteries in the thoracic outlet (Walker, 2012a, 2012b). TOS is perplexing to diagnose because symptoms can vary depending on the structures compressed and the severity of the compression, and patients can present with multiple signs and symptoms if associated with both neurogenic and vascular involvement (Boezaart et al., 2010). Although it is not a new disease, it is often misunderstood (Bingham, 1994). Subsequently, 43% of patients report seeing seven or more doctors before diagnosis (ATOSA, 2011). This quest for diagnosis is coined the “TOS Shuffle” (ATOSA, 2011), and the frustration of obtaining diagnosis often propels patients to the Internet for answers (ATOSA, 2011). The purpose of this study is to explore the cognitive and affective needs expressed in the Facebook TOS Awareness support group. Although a small number of rare disease patient support groups have been conducted, the author could find none on Facebook. Facebook has a rapidly growing number of disease-specific support groups available for patients to connect with (Greene, Choudhry, Kilabuk, & Shrank, 2011). One recent study, for example, identified 290,962 individual Facebook users who were part of 757 groups for common diseases in the United Kingdom alone (Farmer, 2009). In fact, Facebook’s draw is so widespread that physicians and researchers are increasingly using it to recruit for research studies (Bennett, 2011; Ramo & Prochaska, 2012). Facebook’s allure for participation in disease support groups is likely due to both

its ease of access and its openness. Facebook, according to 2010 figures, has 4 million users, not necessarily for patient support group use (Greene et al., 2011). Knowledge of prescreened messages could theoretically stifle genuine expression. As one rare disease patient from the Peer Internet & American Life Project reported of her Facebook support group, “We can tell each other what we wouldn’t tell others” (Fox, 2011, p. 7). This analysis of a Facebook TOS group that is open to the public and not moderated by a professional should provide a genuine understanding of the broad affective and cognitive uses by TOS patients.

THEORETICAL PERSPECTIVE: USES AND GRATIFICATIONS THEORY (U&G) Uses and gratifications theory (U&G) is a useful framework for assessing the content of the TOS Awareness site because it is a psychological communication theory that focuses on the way individuals use mass media (and other communication) to fulfill needs and wants (Rubin, 2002). U&G sees audiences as active communicators, making choice among communication platforms that fulfill needs (Rubin, 2002). Media users have communication needs that can be met by face-to-face interaction, traditional media, and/or new media (Tustin, 2010). Media use, in other words, is selected, goal-directed, and motivated. The fact that some TOS patients have found and are using the TOS group, whether in conjunction with or in lieu of medical advice, implies active selection. Early U&G research endeavors established typologies of media functions primarily related to the media platforms of quiz programs, newspapers, and radio (McQuail, Blumler, & Brown, 2002). In the years following, U&G was used to clarify how people used each new media platform that arose to fulfill needs, and the Internet has been no exception. U&G research has identified several aspects of Internet user needs, including cognitive needs, affective needs, personal integrating needs, social integrating needs, and tensionreleasing needs (Lind, 2009). Of importance to this study, the cognitive and affective needs associated with Internet use have been consistently identified in most findings across time and media platforms. Early U&G endeavors by Katz, Gurevitch, and Haas (1973), for example, identified cognitive and affective needs as two of the five broad mass media needs. McGuire (1974) categorized all mass media needs as either cognitive or affective. Cognitive needs are typically defined as an intrinsic desire for information and understanding (Lind, 2009). Affective needs are variously operationally defined (e.g., desire for emotion/pleasure/feelings/support). Because research with online support groups with chronic diseases has identified a range of emotional needs, this study defines affective needs broadly to include all emotive needs, similar to McGuire’s (1974) early definition.

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RESEARCH ON USES OF PATIENT SUPPORT GROUPS From the perspective of uses of patient support groups, chronic diseases have received most empirical research. Arthritis (Ansani et al., 2005; van Uden-Kraan, Drossaert, Taal, Seydel, & van de Laar, 2008), fibromyalgia (van UdenKraan et al., 2008), HIV (Mo & Coulson, 2008), irritable bowel syndrome (Coulson, 2005), prostate cancer (Blank, Schmidt, Vangsness, Monteiro, & Santagata, 2010), and breast cancer are some of the conditions studied. Of these, breast cancer has been the primary disease of analysis, and as such, it can serve as a base for understanding the needs of rare disease patients. Researchers have largely identified that online breast cancer support groups are used for both informational and emotional needs, with a body of evidence indicating they are used primarily to meet emotional needs (Blank et al., 2010; Rodgers & Chen, 2005). However, at least two studies that compared breast cancer to prostate cancer forums found men used online prostate cancer support groups slightly more for informational than for emotional needs (Blank et al., 2010; Gooden & Winefield, 2007). Of note, while informational and emotional needs have been a mainstay finding in breast cancer studies (and other chronic diseases), definitions of what encompasses informational and emotional needs have varied, and sometimes have been narrowly construed. As part of a broader study of the empathic exchanges of computer-mediated breast cancer support groups by Han et al. (2011), for instance, content analysis of informational needs was limited to instrumental support, which was defined as content discussing medical treatment. Emotional support subcategories were broadened in this study to include those of expressions of empathy, encouragement/support statements, help requests, prayer offers, mentions of Christian beliefs, and mentions of general religious/spiritual views. Other categories of information identified in online breast cancer (and prostate cancer) messages have included getting information and providing information (Rodgers & Chen, 2005), requests for facts about the disease, requesting information, providing knowledge, quoting experience, quoting literature, evidence-based practice, promoting choice, dealing with effects of disease, mentions of my progress, and disease site-related concerns (Gooden & Winefield, 2007). “Getting information” was most prominent in Rodgers and Chen’s (2005) study, while facts about the disease as a category was most prevalent in Gooden and Winefield’s (2007) study. These categories indicate there are different modes of exchanging information taking place (e.g., requesting, providing, promoting), along with different types of information exchanged (e.g., medical treatment, progress, disease effects). Accordingly, the study expands the search category from that of information to “cognitions” to encompass both the modes

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(requesting/providing/promoting) and types of information (medical, progress, etc.) that might be apparent. On the other hand, some identified subcategories of emotional needs have included coping, humor, nurturing, sharing distress, encouragement, challenging the group, offering emotional support, and expressions of well-being (Blank et al., 2010; Gooden & Winefield, 2007). Most emotion subcategories, therefore, have focused on positive affect. Although nurturing, encouraging, offering emotional support, and expressions of wellbeing were most frequently observed, some sharing of distress was also apparent. Categorization that leaves out negative affect, especially toward possible concerns/problems with medical care, diminishes the ability to capture needs that could improve care. Additionally, as at least one recent study of the effects of participating in breast cancer support groups showed higher quality of life, lower depression, and more positive emotions were evidenced when some negative emotions were expressed in online support groups, it is important to include negative affect in content analysis to help understand possible differences in coping (Han et al., 2008). In contrast to the prevalence of breast cancer online support group research, to the author’s knowledge, only two content analyses of rare disease support groups have been conducted, neither of them on Facebook. Lasker, Sogolow, and Sharim (2005) analyzed the content of a mailing list for primary biliary cirrhosis, a rare autoimmune disorder. Of the 710 messages assessed, the authors found members used the site predominantly for biomedical information (which included subcategories of healthcare providers, medications, tests procedures, and symptoms) (Lasker et al., 2005). The study also found members used it for socioemotional needs, primarily for peer support and positive emotions, although some fear, anxiety, frustration, and hope were also found (Lasker et al., 2005). A second rare disease content study of a computer-mediated support group for Huntington’s disease (an inherited disorder that is characterized by progressive degeneration of the brain) found the site was used most for exchanging informational support, followed closely by emotional support (Coulson, Buchanan, & Aubeeluck, 2007). The most common information category identified was advice, and the most common emotional categories identified were encouragement and empathy (Coulson et al., 2007). No negative emotional affect categories were considered in analysis. These two rare disease studies indicate that unlike some breast cancer results, rare disease patients may use support groups more for informational needs (including advice), calling for a broad search of “cognitive” needs. As Lasker et al. (2005, p. 10) stated in his findings with biliary cirrhosis patients, the fact that individuals with rare diseases “struggle with symptoms that are not understood or acknowledged by others” motivates them to use support groups as a resource for discussing their medical condition with peers.” This study’s purpose is to apply an expansive

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search of cognitive and affective needs to analyze the popular online patient support forum of Facebook as it relates to TOS patients.

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RESEARCH QUESTIONS The current study expands U&G research by looking at the relatively new medium of a disease-specific Facebook group as it is used to address needs of people affected by TOS. Some breast cancer support group research, which has been a primary focus of uses of online support research, indicates support groups are used more for emotional than informational needs, but the initial studies of rare diseases point to greater use for informational needs. The first research question, therefore, asked: RQ1: Will affective or cognitive content appear more frequently in the TOS Awareness wall posts? Next, because prior U&G research has identified both cognitive and affective needs in rare disease and chronic disease online support groups like breast cancer, the next two research questions asked: RQ2: What type of affective content appears in the TOS Awareness wall posts? RQ3: What type of cognitive content appears in the TOS Awareness wall posts? Finally, some research that has compared breast cancer online support groups to prostate groups indicate men and women use support groups for different needs (Blank et al. 2010; Gooden & Winefield; 2007), but less is known about use in the rare disease population. The fourth research question, therefore, asked: RQ4: Do the affective and cognitive content, type of post (initiated vs. response), and type of poster (patient, caregiver, unidentified) differ by gender?

METHOD Sample The term “thoracic outlet syndrome” was searched for on Google and in the title of Facebook groups. On May 1, 2012, thoracic outlet syndrome had one active Facebook support group (Thoracic Outlet Syndrome (TOS) Awareness). The TOS Awareness site was created on October 9, 2011. All wall posts initiated and answered by patients or their caregivers/families on the TOS Awareness site between October 9, 2011—the date of origin—and May 1, 2012, were analyzed. (Wall posts are comments made by group members on a group webpage that allows for communication with all group members [Greene et al., 2011].) Individual posters were given a unique identifier, and each initiated and

response post was recorded for the poster. The search parameters resulted in 292 unique total wall posts (encompassing 93 initiated posts and 199 response posts). Coding Strategy The primary purpose of the coding was to explore the cognitive and affective content of the Facebook TOS Awareness support group’s wall posts. The unit of analysis was each theme represented in a post. A theme was defined as a distinct idea or concept (Ryan & Bernard, 2003). A theme could be one sentence long or several. Length was not the criterion; rather, the criterion was the delineation of a consistent, ongoing idea. Coding categories were developed by the researcher and another mass communication researcher during a pilot study with 25 randomly selected TOS initiated posts and 45 randomly selected response posts from the study sample. Some main coding categories that fit the study were selected from earlier U&G research with disease-specific Internet groups (see Attard & Coulson, 2012; Greene et al., 2011). Other categories were developed during the pilot study. The pilot also indicated there were interesting subcategories under some of the main affective and cognitive categories. During the pilot, no new codes arose after roughly 30% of analysis, which suggested saturation (Greene et al., 2011). After resolving coding disagreements through discussion and fine-tuning of the coding procedure, the same researchers coded the remaining 222 posts (out of 292 posts). Disagreements were resolved via discussion on each theme individually. Interrater reliability scores are indicated under each variable. Coding Categories Each theme was classified as either affective or cognitive. Additionally, a post was coded for type of post (initiated/response), type of poster (patient, caregiver, unidentified), and gender of poster. Themes classified as affective were assigned to one of three categories, based in part on categories of patient support groups identified in Greene et al. (2011). Those were (a) gratefulness, in which a poster expressed thankfulness, (b) support/encouragement, in which a poster offered physical or verbal encouragement, and (c) concern/complaints, in which a poster criticized or expressed worry. Scott’s pi for affective categories was .84. Researchers then coded subcategories of the gratitude, support, and concern/complaint categories. Grateful subcategories were coded for gratitude for (a) personal support, (b) patient blogs, (c) family/friends, (d) doctors/medical staff, and (e) surgery/healing. Scott’s pi for grateful subcategories was .86. Support/encouragement subcategories were coded for support for (a) personal support, (b) doctors/medial staff, (c) surgery/healing, (d) TOS awareness, (e) empathetic support, and (f) support for hope for future. Scott’s pi for support subcategories was .82.

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Researchers coded the concern/complaint categories into six subcategories of (a) questioning doctor, (b) complaining about doctors/medical profession, (c) concern, (d) personal distress, (e) fear/scared, and (f) frustration/tired. Scott’s pi for concern/complaint subcategories was .81. Themes classified as cognitive were assigned to one of six cognitive categories, based in part on categories of patient support groups identified in Greene et al. (2011) and Attard and Coulson (2012). They were (a) information sharing, in which a poster shared either information deemed useful to patients or his or her experience; (b) information seeking, in which a poster asked for information or personal experience; (c) advice sharing, in which a poster shared advice about what a patient should do; (d) advice seeking, in which a poster asked for advice about what to do; (e) self-diagnosis, in which a poster stated one had processed information him-/herself that lead to TOS diagnosis or treatment; or (f) promoting doctors/medical facilities, in which a poster specifically recommended a TOS physician or medical facility. Scott’s pi for cognitive categories was .82. Researchers then coded information sharing, information seeking, advice sharing, and advice seeking categories into additional subcategories. Subcategories for information sharing posts were: (a) sharing one’s clinical course of TOS, (b) sharing postoperative (post-op) information, (c) sharing TOS blogs, (d) sharing surgery information, (e) sharing logistical information, and (f) sharing drugs/medicine information. Scott’s pi for information sharing subcategories was .8. Information seeking subcategories were coded for seeking information about (a) post-op, (b) one’s clinical course of TOS, (c) surgery, (d) logistical information, and (e) seeking drugs/medicine information. Scott’s pi for information seeking subcategories was .8. Sharing advice subcategories were coded for sharing advice about (a) surgery, (b) post-op, and (c) diagnosis. Scott’s pi for sharing advice subcategories was .82. Seeking advice categories were assigned to the subcategories of seeking advice about surgery and post-op. Scott’s pi for seeking advice subcategories was .84.1 Additionally, type of post was coded on the basis of whether the post was a first initiation of a post or a response to a post. Scott’s pi for type of post was 1.0. Poster category was coded based on the information given in the post. Posts that expressed people’s own personal TOS journey were coded as patients, while posts that talked about people’s loved one’s TOS journey were coded as parent/caregivers. Some posts asked only a question (e.g., Does anyone know of a good TOS physician in Toronto?) and identity could not be inferred. These few posts were coded as unidentified. Scott’s pi for poster category was .96. Gender was coded according to the gender words used in posts (he/she/ him/her). Facebook pictures were used as a supplement 1 Operational definitions of affective and cognitive categories and subcategories are available on request from the author.

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to verify gender of a few posts. Scott’s pi for gender was .98. Analysis Frequencies and chi-squared tests of categorical variables were conducted with SPSS statistical software.

RESULTS Sample Characteristics Out of 292 unique total wall posts, 218 (74.7%) were written by females, and 74 (25.3%) were written by males. Patients accounted for 264 (90.4%) of posts, family members/caregivers accounted for 24 (8.2%), and unidentified posters accounted for 4 (1.4%) posts. Ninety-three of the total posts were initiated posts, and 199 were response posts. Eighty-four initiated posts (90%) were written by females and 9 (10%) were written by males, while 134 (67%) of response posts were written by females and 65 (33%) were written by males. Eight-four initiated posts and 180 response posts were by the patient, which accounted for 90% of both posts. All postings were by patients. RQ1: Will Affective or Cognitive Content Appear More Frequently in the TOS Awareness Wall Posts? Of the total 292 total posts, 216 cognitive themes and 156 affective themes were identified, indicating TOS patients used the support group more for cognitive than affective reasons. RQ2: What Type of Affective Content Appears in the TOS Awareness Wall Posts? Of the total 156 affective themes, 68 (44%) were about support/encouragement, 44 (28%) were about complaints and concerns, and 44 (28%) were about gratefulness. Of the 68 overall encouragement posts, 21 (31%) were subcategorized as support for surgery/healing, 17 (25%) were support for hope, 9 (13%) were empathetic support, 8 (12%) were personal support, 5 (7%) were support for TOS awareness, and 8 (12%) were support for doctors. Of the 44 complaint/concern posts, 16 (36%) were subcategorized as complaints about doctors/medical staff, 10 (23%) about questioning doctors, 7 (16%) about concern over surgery/healing outcome, 4 each (9% each) about fear and frustration, and 3 (7%) about personal distress. Of the 44 gratefulness posts, 15 (34%) were subcategorized as grateful for personal support, 14 (32%) as grateful for doctors, 8 (18%) as grateful for patient blogs, 5 (11%) as grateful for family, and 2 (5%) as grateful for surgery.

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RQ3: What Type of Cognitive Content Appears in the TOS Awareness Wall Posts? Of the 216 cognitive themes, 125 (58%) were about information sharing; 43 (20%) about information seeking; 29 (13%) were about advice sharing, 15 (7%) were about promotion, and 2 each (1%) were about advice seeking and self diagnosis. Of the 125 information sharing posts, 66 (53%) were subcategorized as sharing one’s clinical course of TOS, 37 (30%) about sharing post-op information, 10 (8%) about sharing blogs, 6 (5%) about sharing surgery information, 4 (3%) about sharing logistical information, and 2 (1%) about sharing drug information. Of the 43 information seeking posts, 15 (35%) were about seeking post-op information, 10 (23%) about clinical course for TOS information, 8 (19%) about logistical information, 7 (16%) about surgery information, and 3 (7%) about drug information. Of the 29 advice sharing posts, 13 (45%) were subcategorized as sharing advice about surgery, 13 (45%) about post-op, and 3 about diagnosis (10%). The two advice seeking posts gave advice about surgery and post-op. The two self-diagnosis and 15 promotion categories were not broken down. RQ 4: Do the Affective and Cognitive Content, Type of Post (Initiated Versus Response), and Type of Poster (Patient, Caregiver, Unidentified) Differ by Gender? Analysis identified two significant gender differences. First, there was a significant difference in the type of post (initiated or response), χ 2 (1, n = 292) = 17.7, p = .01. Of the 292 total posts, men were significantly more likely to respond to a post, while women were significantly more likely to initiate a post. Sixty-five of the 74 posts by men (88%) were response posts, in comparison to 134 of the 218 posts (61%) by women. In contrast, 84 of the 218 initiated posts (39%) were by women in comparison to 9 of the 74 posts (12%) by men. Second, there was a significant difference in poster (patient, family/caregiver, unknown), χ 2 (2, n = 292) = 10.513, p = .005. Specifically, all men who posted, in both initiated and response posts, were patients. No differences in affective or cognitive content were found.

DISCUSSION Curiosity over why people patronize mass media and the benefits they seek from media use has generated much empirical activism among communication researchers (Emenyeonu, 1995). With each new media platform, U&G research has helped identify the cognitive and affective reasons people actively select it. However, although typologies of online patient support groups have been initiated, rare

diseases have largely been neglected. The rise of rare disease patient support groups on Facebook, the number of individuals affected by rare diseases, and the unique characteristics of rare diseases that draw patients to online support groups make investigation of these sites a rich study area. A discussion of each main finding and of its implication for rare disease patient support group research and identification of TOS patient needs follows. Cognitive Dimension Similar to the two initial rare disease studies cited in this article (Coulson, Buchanan, & Aubeeluck, 2007; Lasker et al., 2005), but unlike some early breast cancer support studies, this study indicated patients used the support group to express more cognitive than affective content. The expansion of a search from a limited definition of informational needs to those of broader cognitive needs can be useful to future rare disease patient support group content analyses because it can help delineate both the mode of cognitive needs (share, receive, request) and the type of cognitive needs (clinical course, treatment, self-diagnosis) to better inform care. In this sample, the mode of cognitive needs expressed by TOS patients was foremost about sharing information (58%). They shared information more than they sought information (20%) or shared or sought advice/opinions (13% and 1%, respectively). They did not often promote a specific doctor or medical institution (7%), and they rarely (1%) expressed attempts to self-diagnose—a prominent concern with use of online support groups voiced by some professionals (Yan & Sengupta, 2013). They simply wanted to share, and the knowledge that was uncovered through a broad search of mode of cognitive needs supported prior notions (not always tested) about the importance of being able to openly share in online support groups for the rare disease population. TOS patients, like many rare disease patients, do not get to meet anyone face to face with the same disease, and thus they can become despondent over hearing how unusual and unique they are (Gundersen, 2011). They need someone to mirror and normalize their experiences (Black & Baker, 2011). For purposes of care of TOS patients, it can be recognized that having an outlet that allows one to share with others who have the same disease experience and characteristics can help counteract feelings of social isolation that research has shown to be connected to negative health outcomes such as depression, cardiovascular disease, and increased risk of mortality (Bernberg et al., 2008; Holwerda et al., 2012; Rajaratnam, O’Campo, Caughy, & Muntaner, 2008). Social ties, on the other hand, are associated with mental and physical benefits. Physically, they are known to reduce mortality risk among adults (Gundersen, 2011). Mentally, social network support reduces stress and enhances psychological well-being (Gundersen, 2011). Future studies could compare quality-of-life measures with rare disease patients who are part of an online support group to those who are not.

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Aside from the knowledge that patients primarily want to share information, these results also informed about the content or type of information TOS patients wanted to share and seek. They primarily wanted to share their own “journeys” with their symptoms and path to diagnosis, followed by their stories with postoperative healing. An example of a post that shares their clinical course with their TOS journey is, “How far back do I go? About 4 or 5 years ago I was experiencing pain in my shoulder and down my arm. Thought it was something like carpal tunnel, so I just cut back my ‘mouse’ time on my computer. Two years ago I was having tingling down my arm and some pain in my neck/shoulder, BUT at the same time was having lower back disc issues and my pain was focused there. So after 3 ESI’s [epidural steroid injections] my lower back started feeling better and I noticed that my neck was hurting more.” The broad search for cognitive categories in this study helped assure patients were rarely using the support group to trade medicine/drug information—another concern within the health profession. The needs most TOS patients expressed were simply for replies to: “Is my experience like yours?” “Will I heal?” “Will I get better?

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cant believe how these med specialists, ie orthos, neurologiest, rhuemos, ans etc make u wait months to see u only to say they dont know what the problems is and refer u to another doc with the same story. Its a worthless cycle . . .” An example of a post questioning a specific doctor’s diagnosis was simply, ”I wonder if I have been misdiagnosed?” Furthermore, at times, the quality of complaints/concerns posted exemplified much personal distress over their situation. Examples of posts that expressed distress were found in the following two posts: “i am disabled because of my condition nobody will operate on me or give me treatment im in the u.k. plz help my hand has been swollen for over ten yrs.” A second post read, ”I cant see any point approaching specialists myself i am on the sick. very poor and have no money for private treatment also my doctor wont refer me any where either localy or nationaly so u can see why im so alone wiv [with] it.” In contrast, when TOS patients expressed gratitude, it was most often about gratitude for their physicians after a diagnosis had taken place. Through analysis of both positive and negative affect, a very practical need to help TOS individuals more effectively locate specialists before symptoms progress to the point of despair is identified.

Affect Dimension Although TOS patients/caregivers used the site primarily to share information, the affective content most apparent was encouragement and support to others, especially for postsurgery outcomes and healing. Two examples of surgery/postsurgery support posts were: ”To anyone else out there going in for surgery: if I can do it, you can too!” Also, “Good luck W, I will be praying and thinking of you!” The finding that support/encouragement posts were more prevalent than negative affect posts parallels much breast cancer patient support research and research with other chronic diseases, as well as initial findings with rare diseases. For instance, Chen’s (2012) study comparing online breast cancer support group messages to arthritis and fibromyalgia messages found negative affect posts comprised less than 4% of posts in each disease. The Coulson et al. (2007) study previously cited of online messages of the rare Huntington’s disease found peer support and positive emotions were the most common affect displayed. While encouragement/support posts were most prevalent, it is important to note that complaints/concerns and gratitude were both expressed secondarily (with 44 posts each). Of distinction, complaints/concerns (negative affect) were primarily expressed at the prediagnosis stage, while gratitude was typically expressed post-diagnosis. The most common complaints expressed were about the perceived general medical profession’s inability to diagnose, concern about a possible misdiagnosis from a specific doctor, and belief that physicians do not understand the severity of their symptoms (e.g., it’s not all in my head). An example of a complaint about the general medical profession was, “I

Gender, Limitations, and Future Direction Unlike some studies comparing men’s use of prostate cancer support groups to women’s use of breast cancer support groups, this sample indicated no differences between men and women’s cognitive and affective uses. The study did show, however, that men (who were all patients, in comparison to women, who were also caregivers) were participating in the TOS Awareness Facebook group conversation, but more so in response to posts, rather than in initiation of posts. According to one study, a more “passive” use of patient support groups can still result in psychological benefits such as improved self-esteem, social well-being, and empowerment (van Uden-Kraan, Drossaert, Taal, Seydel, & van de Laar, 2008). Although there was a small sample of men that limits generalizability (given that TOS affects women to men at a 4:1 ratio), it is important to still note as a first step toward comparing gender uses across other rare vascular conditions in future analysis (Boezaart et al., 2010). The study was additionally limited by being primarily Caucasian; however, this too may be a factor of the disease, as the predisposition to TOS in non-Caucasians is not well defined in the medical literature. A final possible study limitation was the coding of three posts for gender according to the profile picture on Facebook, as it is theoretically possible that a spouse’s/other’s picture could be used. In conclusion, although many people are affected by rare diseases, they have often been neglected in research (Bohr, Sander, & Kraemer, 2005; Daina, 1994; Huyard, 2009). Lack of research, in turn, has stunted treatment options (Bohr et al., 2005; Daina, 1994; Huyard, 2009). As Dolcourt, a

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neonatologist and father of a child with Freeman–Sheldon syndrome, a rare genetic condition, found from analysis of Freeman–Sheldon support group messages, even patient anecdotal stories can have value for care (Dolcourt, 1992). When reading others’ stories, he found 2 out of 37 families reported the presence of malignant hypothermia, contrary to medical literature (Dolcourt, 1992). That information can now be used to help anesthesiologists choose anesthetic agents that are safe for malignant hypothermia-susceptible Freeman–Sheldon individuals (Dolcourt, 1992). Because rare diseases are increasingly being identified, including vascular-related ones, future U&G studies of Facebook patient support group research should conduct a broad cognitive and affective analysis of content with other rare vascular conditions, grouped according to similar disease structures, to see whether there are overlapping typologies of needs that can inform care (Wastfelt, Fadeel, & Henter, 2006). Future studies should also include gratifications obtained versus gratifications sought from the support groups to further aid understanding of this growing yet understudied population.

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