JMIR Publications

ABSTRACT

Background:

Peer online forums offer people experiencing mental health challenges easily accessible and anonymous support. However, little is known about the impacts of using forums, how these impacts are generated, or who might benefit from which type of forum.

Objective:

Our aim was to develop a programme theory to understand how peer online mental health forums work to help potential users, health professionals, service providers and commissioners to decide whether to use forums and which to choose.

Methods:

A realist evaluation using a mixed-methods, case series design in collaboration with seven peer online mental health forums. We triangulated analysis of a large online survey (n = 791) with in-depth realist interviews (n = 52) to test and refine previously developed programme theories about the impacts of using online forums. We then analysed forum posts to identify in-situ evidence for our revised theories. We only used forum posts from individuals who had freely consented to posts being shared for research. Data collection and analysis involved extensive input from our Patient and Public Involvement (PPI) Group including forum users, moderators, and senior forum staff (n = 22), which met monthly for 22, two hour-long workshops throughout the study.

Results:

Impacts of using peer online mental health forums were largely positive. Forums that are easy to navigate, make users feel safe to post, and are supported by well-trained moderators offering timely and sensitive responses can help people find new ways to make sense of their mental health challenges, feel understood and accepted in the forum. This can lead to an increase in self-efficacy, reduction in self-stigma, and increased mental wellbeing. Writing about experiences in a forum can itself be cathartic, but when posts have evidently been helpful to other members, posters also benefit from a sense of greater purpose and value. Negative impacts can occur if forums are difficult to navigate; or if moderation is unresponsive, insensitive, or inadequate, as users can be left feeling unheard, misunderstood, or overly responsible for the welfare of others.

Conclusions:

Forums offer accessible and inclusive ways to effectively support mental health for many people, some of whom may have limited access to other forms of help. The impacts on users are largely positive, but care is needed to ensure forums are well designed and moderators are well trained and supported. These findings are being used to inform codesign of an Online Moderator Toolkit, and Design Guidelines which will be made freely available. Clinical Trial: ISRCTN 62469166