JMIR Publications

ABSTRACT

Background:

Internet support groups (ISGs) enable users to provide peer support by exchanging knowledge about and experiences in coping with their illness. Several studies exploring the benefits of ISGs for depression found positive effects on recovery-oriented values including empowerment, but to date little attention has been paid to user narratives.

Objective:

To capture the user perspective on an online peer support community for depression with a focus on modes of user engagement and the benefits people derive from forum participation.

Methods:

In a qualitative study, 15 semi-structured interviews were conducted with users of Depression Connect (DC), a newly developed online peer support community. Combining a concept-driven and a data-driven approach, we aimed to gain insight into what users value in our DC platform and whether and how DC promotes empowerment. In a thematic analysis we explored the (de)merits users reported using theoretical concepts widely-used in ISG 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 DC. 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 DC to contribute to a sense of belonging, emotional growth, self-efficacy and empowerment. “Getting too caught up” was the most frequently reported negative aspect of DC use. The deployment and development of 3 participation styles (ie, reading, posting and responding) affected the perceived benefits of DC 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, DC was predominantly used to supplement offline support and care for depression and mainly served as a safe environment where members could freely reflect on depression and exchange and practice coping strategies.

Conclusions:

Shedding new light on user engagement processes on which ISGs rely, we conclude that the online community primarily served as a virtual meeting place to practice (social) skills for deployment in the offline world. It allowed its members to learn from each other’s knowledge and experiences and explore newly gained insights and coping skills.