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.
Background Living with recurrent, and/or chronic depression requires long-term management in addition to active coping on a day-to-day basis. Previous research on long-term management, and coping with depression mainly focused on identifying self-management strategies. However, research on the conditions for deploying self-management strategies in depression is lacking. By means of exploring the development of experiential knowledge in depression, and its relation with coping with depression, this study aims to gain insight into the conditions for deploying self-management strategies. Methods In the current qualitative study, individual pathways to recovery, living with depression, and recurrence risk were assessed, including but not limited to long-term management. ‘Experiential knowledge’, which can be defined as patients’ unique knowledge and own lived experiences in facilitating and debilitating factors in the recovery process and coping with the disorder, was used as a sensitizing concept. Thirteen semi-structured interviews were conducted with individuals who experienced at least two depressive episodes and were currently in (partial) remission, plus two deviant cases were interviewed to check for saturation. Until saturation was achieved, participants were purposively selected to include diverse perspectives on coping with depression. Data were analysed using a narrative research method. Results The results show that deploying self-management strategies are an integral part of ‘experiential knowledge’. The evolvement of experiential knowledge can be seen as a cyclical process of the main themes that were identified as relevant when coping with depression: introspection, empowerment, self-management strategies, and external moderators of the environment. The identification of supporting and impeding factors in coping with depression from a patient perspective might increase a sustainable use of self-management strategies. Conclusion These results highlight the need for an individualised holistic model of coping with depression, both in research, and in practice. By means of integrating experiential knowledge in this holistic approach, the conditions for deployment of self-management strategies in depressive patients can be specified.
BACKGROUND Despite their popularity, the efficacy of online peer support communities for individuals with depression remains unclear. Little is known about the working mechanisms of online communities in general and for depression specifically. The evidence for the efficacy of online peer support for depression is confounded by methodological issues and ambiguity of relevant outcome measures. OBJECTIVE This study aimed to evaluate the usefulness of an online peer support community for depression from a user perspective. By employing qualitative modes of inquiry, the aim was to generate hypotheses on the mechanisms of change and outcomes of online peer support usage in depression. METHODS Fifteen semi-structured interviews were conducted with users of the online peer support community Depression Connect [DC], in which experiences and outcomes of forum use in coping with depression were examined. To explore diverse perspectives of community usage, theoretical sampling was performed, and negative cases were included. RESULTS A complex set of factors seemed to influence the subjective usefulness of the online peer support community DC from a consumer perspective. The data revealed 4 distinctive user experiences: A sense of belonging, emotional growth, self-efficacy, and empowerment. Furthermore, losing oneself was the central negative aspect of forum use. The deployment and development of 3 differentiated user roles (e.g., reading, posting, responding) seemed to individually and interactively affect user experiences. Finally, the online peer support community seemed to serve as a digital realm to practice and reflect on coping with depression and was mainly used as a supplement to offline support for depression. CONCLUSIONS The DC online peer support community allowed individuals familiar with depression to learn how to cope (better) with depression and practice these newly gained insights/skills. It may serve as a supplement to formal care for depression.
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