JMIR Publications

ABSTRACT

Background:

Type 1 diabetes (T1D), the most common chronic disease in children and youth, has visible symptoms and management imperatives. These can contribute to stigma, perceived or experienced by 65% of participants in our Canada-wide on-line study in youth with T1D. In response, we built the Canadian Virtual Peer Network private Facebook page for persons 14-24 years old with T1D (VPN-T1D). We here apply novel analytic methods to ascertain the nature of participation and the degree of social support in this network.

Objective:

Applying social network and directed content analysis, our specific aims were to assess the distribution of different types of communications in VPN-T1D, the central importance of designated leaders compared to regular members, and the proportion of communications that were social support-related.

Methods:

We recruited 10 peer leaders from stigma study participants who provided insightful comments and from our clinic patients whom we believed to be suited to such a role. We trained the leaders at a one-day workshop, provided a monthly stipend, and encouraged them to post on a private Facebook group that we created and launched on June 21, 2017. We recruited regular members from among participants in our prior stigma study and through clinics and social media. For the period between launch and March 20, 2020, we extracted all communications (posts, messages, reactions, polls, votes, and views), and classified these by category. We computed each member’s centrality ([80% of higher engagement communications comprising posts, comments, and reactions + 20% of members with whom connected]) and divided each centrality value by the highest centrality. We compared relative centrality between leaders and members (linear regression). We enumerated social support-related communications (informational, emotional, esteem, network, tangible assistance; directed content analysis).

Results:

VPN-T1D gained 212 regular members over 33 months, with 26 exiting (11·7%). There were 5,109 posts/comments (6·8%), 6,233 reactions (8·3%), and 63,709 views (84·9%); 203 (91%) members connected at least once through post, comment, or reaction. Relative centrality averaged 0·53 (SD 0·26) for peer leaders and 0·04 (SD 0·05) for regular members (0·49 difference, 95%CI: 0·44, 0·53). Fifty-five percent of posts/comments were social support-related, over half informational (e.g., insurance, travel preparation) and one fifth esteem-related (e.g., relieving blame).

Conclusions:

The preponderance of activity was passive, as reflected by the high proportion of views without comment or reaction. However, the low group exit rate suggests perceived value. The higher relative centrality of leaders suggests that training and stipends foster a core that generates content. A large proportion of communications were social support-related, primarily related to information exchange and esteem building. Our findings provide a benchmark for the nature and extent of participation in virtual chronic disease communities and confirms their importance in providing social support.