Accepted for/Published in: JMIR Mental Health
Date Submitted: Dec 20, 2021
Date Accepted: Aug 17, 2022
Use of an online forum for relatives of people with psychosis and bipolar disorder: a multi-method study
ABSTRACT
Background:
Relatives of people with psychosis or bipolar disorder experience high levels of distress but typically are not offered the support they need. Peer online forums may offer a solution, but knowledge about who uses them, how and why is limited. The current study reported on online forum usage during the REACT trial [21].
Objective:
We aimed to report: (1) who used the forum and why; (2) how sociodemographic factors are associated with participation; (3) the relationships between frequency, type of use, and outcomes; and (4) how the forum was used.
Methods:
Relationships between key socio-demographic characteristics, levels of forum use, and distress were statistically analysed. We used thematic and semantic analysis to understand the reasons relatives joined the forum and the key topics initiated by them. We also used the UCREL Semantic Analysis System (USAS) to compare how relatives and REACT Supporters (moderators) used the forum.
Results:
348 participants from REACT had complete web-usage data and were included in this study. The forum was accessed by 59% of relatives across the whole age range with no significant associations between sociodemographic factors and forum participation, or between level/type of use and relatives’ distress levels. Relatives joined the forum primarily to find people in similar circumstances, express concerns and talk about stressful events. Relatives were concerned most about recent events, negative emotions linked to caring, experiences of conflict/threat, and concerns about suicide. These posts underscored both the challenges relatives were facing and that they felt safe to share these in this context.
Conclusions:
Whilst only a proportion of REACT participants engaged actively with its forum they are widely distributed across age and other sociodemographic groupings. Relatives used the forum for information, support and guidance and to offer detailed information about their experiences. The topics raised highlight the burden carried by relatives and the potential value of easy access, moderated, peer supported forums in helping relatives manage the challenges they face.
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