Social Connection and Online Engagement: Insights From Interviews With Users of a Mental Health Online Forum

Abstract

Background Over the past 2 decades, online forums for mental health support have emerged as an important tool for improving mental health and well-being. There has been important research that analyzes the content of forum posts, studies on how and why individuals engage with forums, and how extensively forums are used. However, we still lack insights into key questions on how they are experienced from the perspective of their users, especially those in rural and remote settings. Objective The aim of our study was to investigate the dynamics, benefits, and challenges of a generalized peer-to-peer mental health online forum from a user perspective; in particular, to better explore and understand user perspectives on connection, engagement, and support offered in such forums; information and advice they gained; and what issues they encountered. We studied experiences of the forums from the perspective of both people with lived experience of mental illness and people who care for people with mental illness. Methods To understand the experience of forum users, we devised a qualitative study utilizing semistructured interviews with 17 participants (12 women and 5 men). Data were transcribed, and a thematic analysis was undertaken. Results The study identified 3 key themes: participants experienced considerable social and geographical isolation, which the forums helped to address; participants sought out the forums to find a social connection that was lacking in their everyday lives; and participants used the forums to both find and provide information and practical advice. Conclusions The study suggests that online peer support provides a critical, ongoing role in providing social connection for people with a lived experience of mental ill-health and their carers, especially for those living in rural and remote areas. Forums may offer a way for individuals to develop their own understanding of recovery through reflecting on the recovery experiences and peer support shown by others and individuals enacting peer support themselves. Key to the success of this online forum was the availability of appropriate moderation, professional support, and advice.

Combining online and offline peer support groups in community mental health care settings: a qualitative study of service users’ experiences

“…Online anonymity was also described as being less genuine and hence limiting a sense of connection and community. A recent study also reflects on similar dilemmas related to solely online support groups [33]. In this study anonymity is described as a "double-edged sword" (p. 7) in the sense that it allowed the users to let more out, but at the same time they had to be careful about who knows who you are in the offline world.…”

“…Prevalent throughout the findings were known features of online peer support such as recognition, acknowledgement and self-disclosure [40]. It appeared important that both formats were peer moderated and offered outside the context of mental health services and its health providers [33,66]. In addition, the analysis identified a number of benefits and challenges of combined online and offline peer support.…”

“…Connectedness through the combined formats was reportedly instrumental in regaining employment for one participant, suggesting at least a potential for the types of tangible improvements that others have found elusive [46] are possible. One study suggest that online peer support offers help for specific questions such as housing and employment [33]. The participants' reciprocal focus upon personal strengths and what they could do collectively, as well as their engagement in community activities or the job market appeared to be empowering and meaningful, both of which are predictors of recovery-oriented outcomes [68].…”

“…Studies of online peer support groups find many positive aspects that resemble those of offline peer support groups, including; social connectedness [31][32][33], help cope with day-to-day challenges and stigma reduction [33], and facilitate insights into health care decisions [32], empowerment [34], and recovery processes [33,35]. Additionally, online peer support groups have been found to provide emotional support, insights and experiences about living with mental health problems which are not typically available through traditional mental health care [36].…”

The Public Health Impact and Policy Implications of Online Support Group Use for Mental Health in Singapore: Cross-Sectional Survey

“…The increasing use of online and mobile technologies for mental health peer support has been termed “digital peer support”; this is defined by researchers as “live or automated peer support services delivered through technology media such as peer-to-peer networks on social media, peer-delivered interventions supported by smartphone apps, and asynchronous and synchronous technologies” [ 1 ]. They also provide other essential elements important for coping, including the following: empowerment, information, advice, a sense of control, and a sense of being able to help others [ 4 , 5 ]. Thus, mental health peer support in online support groups facilitates the sharing of personal experiences, enables information exchange on the day-to-day management of disease, and is a source of advice on resolving some of the most psychologically difficult issues among peers with similar mental health problems and comorbid conditions [ 6 ].…”