JMIR Publications

ABSTRACT

Background:

Although research has found online peer support forums to be helpful for those with mental health conditions, no studies to date have explored the experiences of those who use forums for support with postpartum psychosis specifically.

Objective:

This study aimed to understand lived experiences of using online forums for postpartum psychosis, and how this form of support differs to that of professional and other informal support.

Methods:

This was a qualitative study including semi-structured interviews with eight participants. Recruitment took place via an online forum run by a charity called Action on Postpartum Psychosis. Transcripts were analysed using Interpretative Phenomenological Analysis.

Results:

Four themes were developed in line with participants’ experiences: 1) from isolation to connection: validation, growth and hope from shared experiences; 2) complementing not replacing: filling the gaps in support; 3) impacts of privacy, representation and readiness to share on engagement; 4) relational experiences within peer support: altruism, boundaries and comparison. All participants believed forums were helpful to their wellbeing and recovery, however some also reported difficulties with engagement, comparison and regulating their own use. Findings suggest that forums may benefit from being designed in a way that protects users and their identities, e.g. via trigger warnings and setting boundaries.

Conclusions:

Peer online forums offer a unique and potentially effective addition to existing support provided by professionals and personal connections. Professionals should signpost people experiencing postpartum psychosis to forums, but understand the support that may be needed in terms of monitoring use and ensuring that appropriate boundaries are put into place.