Type 1 Diabetes Mellitus Virtual Patient Network as a Peer Support Community: Protocol for Social Network Analysis and Content Analysis

Abstract

Background Type 1 Diabetes Mellitus Virtual Patient Network (T1DM-VPN) is a private Facebook group for youths with type 1 diabetes mellitus (T1DM) in Canada intended to facilitate peer-to-peer support. It was built on the finding that stigma is prevalent among youth with T1DM and impedes self-management. Objective We aim to determine if T1DM-VPN provides support as intended and to ascertain what type of members provide support. Specifically, we will (1) identify text consistent with any one of 5 social support categories, (2) describe the network by visualizing its structure and reporting basic engagement statistics, and (3) determine whether being a designated peer leader is related to a member’s centrality (ie, importance in the network) and how frequently they offer social support. Methods We will manually extract interaction data from the Facebook group (posts, comments, likes/reactions, seen) generated from June 21, 2017 (addition of first member), to March 1, 2020. Two researchers will independently code posts and comments according to an existing framework of 5 social support categories—informational, emotional, esteem, network, and tangible—with an additional framework for nonsocial support categories. We will calculate how frequently each code is used. We will also report basic engagement statistics (eg, number of posts made per person-month) and generate a visualization of the network. We will identify stable time intervals in the history of T1DM-VPN by modeling monthly membership growth as a Poisson process. Within each interval, each member’s centrality will be calculated and standardized to that of the most central member. We will use a centrality formula that considers both breadth and depth of connections (centrality = 0.8 × total No. of connections + 0.2 × total No. of interactions). Finally, we will construct multivariate linear regression models to assess whether peer leader status predicts member centrality and the frequency of offering social support. Other variables considered for inclusion in the models are gender and age at diagnosis. Results T1DM-VPN was launched in June 2017. As of March 1, 2020, it has 196 patient-members. This research protocol received ethics approval from the McGill University Health Centre Research Ethics Board on May 20, 2020. Baseline information about each group member was collected upon addition into the group, and collection of interaction data is ongoing as of May 2020. Conclusions This content analysis and social network analysis study of a virtual patient network applies epidemiological methods to account for dynamic growth and activity. The results will allow for an understanding of the topics of importance to youth with T1DM and how a virtual patient network evolves over time. This work is intended to serve as a foundation for future action to help youth improve their experience of living with diabetes. International Registered Report Identifier (IRRID) PRR1-10.2196/18714

Assessment of Selected Aspects of the Quality of Life of Children with Type 1 Diabetes Mellitus in Poland

“…Due to the important, constantly growing role of the Internet—as a place of searching for information, contact, and support for patients with T1D [ 28 , 29 ]—the survey was conducted among social media users associated in groups with families of children and adolescents with T1D.…”

Toward a better understanding of transition from paediatric to adult care in type 1 diabetes: A qualitative study of adolescents

“…34 These findings together suggest the need for improved and more visible communication between paediatric and adult care teams as well as transition models incorporating peer support. We have since created a Virtual Patient Network to facilitate peer-to-peer support among adolescents and emerging adults with type 1 diabetes 35 and are currently undertaking a randomized controlled trial evaluating group education for transition care, which may help to provide quantitative evidence for peer support in improving transition outcomes. 36 Moreover, self-management of type 1 diabetes and the need to increase this responsibility was highlighted by participants as crucial for successful transition.…”

Association of stigma, diabetes distress and self‐efficacy with quality of life in adolescents with type 1 diabetes preparing to transition to adult care

“…5 In response to these findings, we have since created a virtual community of adolescents and emerging adults with T1D as a platform for peer support. 31 With the participants of the present study, we are conducting an RCT evaluating peer support groups as a component of transition care healthcare delivery and will be assessing stigma as an outcome. 20 We found that diabetes distress was associated with lower QOL and clinically important differences in QOL scores between those with and without diabetes distress (i.e.…”