Background: Internet support groups enable users to provide peer support by exchanging knowledge about and experiences in coping with their illness. Several studies exploring the benefits of internet support groups for depression have found positive effects on recovery-oriented values, including empowerment. However, to date, little attention has been paid to user narratives.
Objective: This study aims to capture the user perspective on an online peer support community for depression with a focus on the modes of user engagement and the benefits users derive from participation in the forum.
Methods: In this qualitative study, we conducted 15 semistructured interviews with users of Depression Connect, a newly developed online peer support community for individuals with depression. Combining a concept-driven and a data-driven approach, we aimed to gain insight into what users value in our Depression Connect platform and whether and how the platform promotes empowerment. We performed a thematic analysis to explore the merits and demerits reported by users by using theoretical concepts widely used in internet support group research. In the subsequent data-driven analysis, we sought to understand the relationship between different styles of user engagement and the participants' experiences with the use of Depression Connect. Data analysis consisted of open, axial, and selective coding. To include as diverse perspectives as possible, we opted for purposive sampling. To verify and validate the (interim) results, we included negative cases and performed member checks.
Results: We found participation in Depression Connect contributes to a sense of belonging, emotional growth, self-efficacy, and empowerment. "Getting too caught up" was the most frequently reported negative aspect of using Depression Connect. The deployment and development of three participation styles (ie, reading, posting, and responding) affected the perceived benefits of Depression Connect use differentially, where the latter style was central to enhancing empowerment. "Being of value to others" boosted the users' belief in their personal strength. Finally, Depression Connect was predominantly used to supplement offline support and care for depression, and it mainly served as a safe environment where members could freely reflect on their coping mechanisms for depression and exchange and practice coping strategies.
Conclusions: Our findings shed new light on user engagement processes on which internet support groups rely. The online community primarily served as a virtual meeting place to practice (social) skills for deployment in the offline world. It also allowed the members to learn from each other's knowledge and experiences and explore newly gained insights and coping skills.
Keywords: depression; empowerment; experiential knowledge; internet support group; online peer support community; participation style; patients’ perspectives; qualitative research; self-management.
©Dorien Smit, Janna N Vrijsen, Bart Groeneweg, Amber Vellinga-Dings, Janneke Peelen, Jan Spijker. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 12.07.2021.