I Am Not Alone in My Struggle: Importance of Online Communities for Turner Syndrome

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Kristin M. Schramer and Kathryn D. Lafreniere

The growth of online communities, communities in which members communicate primarily through electronic means, has led to interest in their ability to develop a sense of community in their members, often referred to as Sense of Virtual Community (SOVC) (Abfalter, Zanglia, & Mueller, 2012). There is evidence that members of online communities develop SOVC similarly to face-to-face (FTF) communities in line with the four dimensions of Sense of Community proposed by McMillan and Chavis (1986), which include: membership, influence, integration and fulfillment of needs, and shared emotional connection. Online support communities can transcend geographical, physical, and financial barriers to communication among members, and therefore may be important for individuals diagnosed with rare genetic conditions like Turner Syndrome (TS).

“There is evidence that members of online communities develop SOVC similarly to face-to-face (FTF) communities in line with the four dimensions of Sense of Community proposed by McMillan and Chavis (1986), which include: membership, influence, integration and fulfillment of needs, and shared emotional connection.”

TS is characterized by the total or partial loss of the second X chromosome. It is estimated that TS occurs in 1 of every 2,500 live female births. The most common characteristics are depleted levels of estrogen and progesterone leading to amenorrhea, ovarian failure, and infertility, as well as short stature (Bondy, 2007). Because TS is a rare diagnosis, this leads to a geographically disperse community in which individuals often go into adulthood without ever interacting with another individual with TS.

Facebook groups, the Turner Syndrome Society of Canada (TSSC), and the Turner Syndrome Society of the United States (TSSUS), are communities that provide the opportunity for individuals affected by TS to connect. As with any Facebook group, members of TS Facebook groups can communicate through posting and responding to questions or comments on the group’s “wall.” Group members can also like or dislike other members’ posts and can send friend requests and private messages to other group members (Facebook, n.d.).

TSSC (n.d.) and TSSUS (n.d.) are national organizations that provide support for individuals affected by TS for a yearly membership fee which varies, based on the type of membership purchased (i.e., individual, family, or professional). These groups offer the opportunity to participate in FTF interactions through their annual conferences and events held by local support groups. Their webpages provide access to up-to-date research on TS, the ability to pose questions to health professionals, discussion boards, information on local groups and fundraising activities, and online stores. These organizations also maintain active social media accounts on Facebook, Instagram, Twitter, etc. (TSSC, n.d.; TSSUS, n.d.). Published recommendations specific to individuals with TS indicate that early involvement with organizations like TSSUS should be encouraged (Bondy, 2007). However, to the authors’ knowledge, no research has investigated the benefits of belonging to such communities.

Exploring Online Communities for Turner Syndrome

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Image provided by the Turner Syndrome Society of Canada

To learn about the potential benefits of belonging to TS online communities, members of TS-based Facebook groups, the TSSC, and the TSSUS were recruited through their communities and Facebook posts. Respondents completed an online survey that included measures of community participation unique to each community, health-related social support (Perceived Health-Related Social Support from Facebook Friends Measure; Oh, Lauckner, Boehmer, Fewins-Bliss, & Li, 2013), perceived level of TS knowledge, and Sense of Virtual Community (Sense of Community Index 2–Virtual Community Version; Abfalter, Zaglia, & Mueller, 2012). Questionnaires were adapted so that measures referred to the participating communities. Nine responses were received from individuals affected by TS who belonged to at least one online TS community. As there were only nine respondents, their responses cannot be generalized and may not be reflective of other community members’ experiences. However, despite the small sample size, we felt that it was important to share these women’s experiences.

All respondents (n = 9) reported that they felt more knowledgeable about TS due to their community membership as they indicated this statement was at least somewhat true. It should be noted that three of these respondents belonged to more than one community for a total of twelve responses (m = 6.08 out of a maximum of 7). This knowledge came from attending FTF events and communication with other community members. All respondents indicated that they participated in their communities (n = 9). FTF activities included attending national or local events (n = 9), while online activities included reading material from their community (e.g., e-mails, posts, and publications; n = 8) and communicating with other community members through online forums (e.g., posing or answering questions; n = 4). FTF events, such as attending TSSC or TSSUS conferences, as well as Facebook groups, were used to keep in touch with others and to form FTF relationships. Participating in FTF activities, such as local chapter events, as well as online activities, such as posting to discussion boards, were used to promote education and awareness about TS.

All respondents reported that they felt more knowledgeable about Turner Syndrome due to their community membership.

The mean score of all respondents (n = 7) who completed the adapted Health-Related Social Support from Facebook Friends Measure (Oh et al., 2013) fell above the mid-point of the scale (n = 7) and indicated that they felt the items were at least somewhat true. This demonstrates that respondents generally felt that other community members would provide them with support regarding their health-related needs. It should be noted that three of these respondents belonged to more than one community for a total of ten responses (m = 5.85 out of a maximum of 7). This belief occurred for appraisal, esteem, and emotional support, but not for tangible support. When asked about social support they have provided to other community members, respondents reported providing informational support on health- related issues, tangible support (e.g., giving rides), and emotional support and encouragement. This paralleled the reported types of support respondents indicated they received from their communities, reporting they had received informational support as well as emotional support and encouragement.

Respondents generally felt that other community members would provide them with support regarding their health-related needs.

Of the seven respondents who completed the Sense of Community Index 2–Virtual Version (Abfalter et al., 2012) five respondents’ scores fell above the mid-point of the scale indicating they mostly or completely agreed with these statements. It should be noted that three of these respondents belonged to more than one community for a total of ten responses (m = 1.89 out of a maximum of 3). Results for each of the subscales were analogous to the overall score. This demonstrates that respondents to this survey perceived a sense of membership and influence over their communities, that these communities fulfilled the needs of their members, and that members felt a shared emotional connection with others in their community. The shared emotional connection subscale had the greatest mean score, which may indicate that the most important aspect of feeling like one is connected to their community involved having quality relationships, sharing similar experiences, and feeling invested in the community.

As stated earlier, these responses should be viewed with caution as they may not be reflective of all members of TS communities, due to the very small sample size and some incomplete questionnaires. Additionally, the benefits of FTF as well as online interaction are entangled within these communities and therefore are difficult to tease apart. Nonetheless, this preliminary evidence is encouraging, as this study is the first demonstration of the benefits of belonging to communities for individuals affected by TS. Despite being geographically dispersed, these communities promote a sense of community within their members. While the current findings cannot determine how sense of community develops or how it may be related to benefits of belonging to these communities (i.e., knowledge and support), they indicate that these respondents actively participate in their communities and experience benefits which are likely due, at least in part, to being able to connect online with others affected by TS. The ability to connect with others and obtain information from the community electronically allows these individuals with TS to overcome geographical, physical, and financial barriers to connecting with others affected by TS. The importance of such a connection is best exemplified by one respondent’s explanation for participation in her community, “It is a continual reminder that I am not alone in my struggle.”

References

Abfalter, D., Zaglia, M. E., & Mueller, J. (2012). Sense of virtual community: A follow up on its measurement. Computers in Human Behavior, 28, 400–404. doi:10.1016/j.chb.2011.10.010

Bondy, C. A. (2007). Care of girls and women with Turner syndrome: a guideline of the Turner Syndrome Study Group. The Journal of Clinical Endocrinology & Metabolism, 92, 10-25. doi: 10.1210/jc.2006-1374

Facebook (n.d.). Groups. Retrieved from: https://www.facebook.com/help/1629740080681586/?helpref=hc_fnav

McMillan, D., & Chavis, D. (1986). Sense of community: A definition and theory. Journal of Community Psychology, 14, 6–23.

Turner Syndrome Society of Canada (n.d.). Home. Retrieved from: http://www.turnersyndrome.ca/

Turner Syndrome Society of the United States (n.d.). Home. Retrieved from: http://www.turnersyndrome.org/

This is an advance copy of a forthcoming article in the The Community Psychologist.   

Resources:  To learn more about Turner Syndrome, please visit the Turner Syndrome Society of Canada at http://www.turnersyndrome.ca/ or Turner Syndrome Society of the United States at https://www.turnersyndrome.org/.


Interested in Sense of Community?  Community Science is pleased to announce the launch of the newly revamped SenseofCommunity.com, an online, international meeting place for people interested in the study or application of sense of community! Read more about senseofcommunity.com here!

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