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Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study.
- Source :
- JMIR Mental Health; Oct2022, Vol. 9 Issue 10, p1-13, 13p
- Publication Year :
- 2022
-
Abstract
- Background: Relatives of people with psychosis or bipolar disorder experience high levels of distress but are typically not offered the support they need. Online peer forums may offer a solution, but knowledge about who uses them, how, and why is limited. This study reported on online forum use during the Relatives Education and Coping Toolkit (REACT) trial. Objective: We aimed to report who used the forum and why; how sociodemographic factors are associated with participation; the relationship among frequency, type of use, and outcomes; and how the forum was used. Methods: The relationships between key sociodemographic characteristics, levels of forum use, and distress were statistically analyzed. We used thematic and semantic analyses to understand the reasons for relatives joining the forum and the key topics initiated by them. We also used the University Centre for Computer Corpus Research on Language Semantic Analysis System to compare how relatives and REACT supporters (moderators) used the forum. Results: A total of 348 participants with full forum use data from REACT were included in this study. The forum was accessed by 59.4% (207/348) of the relatives across the entire age range, with no significant associations between sociodemographic factors and forum participation, or between level or 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 most concerned about recent events, negative emotions linked to caring, experiences of conflict or threat, and concerns about suicide. These posts underscored both the challenges the relatives were facing and the fact that they felt safe sharing them in this context. Conclusions: Although only a proportion of REACT participants engaged actively with its forum, they were 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 highlighted the burden carried by relatives and the potential value of easy-access, moderated, peer-supported forums in helping relatives to manage the challenges they faced. [ABSTRACT FROM AUTHOR]
- Subjects :
- EVALUATION of medical care
STATISTICS
SOCIAL support
PSYCHOSES
INTERNET
RESEARCH methodology
MEDICAL care
FISHER exact test
MENTAL health
RANDOMIZED controlled trials
SUPPORT groups
RESEARCH funding
QUESTIONNAIRES
DESCRIPTIVE statistics
SOCIODEMOGRAPHIC factors
THEMATIC analysis
STATISTICAL sampling
DATA analysis software
DATA analysis
BIPOLAR disorder
PSYCHOLOGICAL distress
Subjects
Details
- Language :
- English
- ISSN :
- 23687959
- Volume :
- 9
- Issue :
- 10
- Database :
- Complementary Index
- Journal :
- JMIR Mental Health
- Publication Type :
- Academic Journal
- Accession number :
- 159861876
- Full Text :
- https://doi.org/10.2196/35837