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Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study
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 duri...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9634518/ https://www.ncbi.nlm.nih.gov/pubmed/36264621 http://dx.doi.org/10.2196/35837 |
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author | Jones, Steven Atanasova, Dimitrinka Dodd, Susanna Flowers, Susan Rosala-Hallas, Anna Robinson, Heather Semino, Elena Lobban, Fiona |
author_facet | Jones, Steven Atanasova, Dimitrinka Dodd, Susanna Flowers, Susan Rosala-Hallas, Anna Robinson, Heather Semino, Elena Lobban, Fiona |
author_sort | Jones, Steven |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9634518 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-96345182022-11-05 Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study Jones, Steven Atanasova, Dimitrinka Dodd, Susanna Flowers, Susan Rosala-Hallas, Anna Robinson, Heather Semino, Elena Lobban, Fiona JMIR Ment Health Original Paper 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. JMIR Publications 2022-10-20 /pmc/articles/PMC9634518/ /pubmed/36264621 http://dx.doi.org/10.2196/35837 Text en ©Steven Jones, Dimitrinka Atanasova, Susanna Dodd, Susan Flowers, Anna Rosala-Hallas, Heather Robinson, Elena Semino, Fiona Lobban. Originally published in JMIR Mental Health (https://mental.jmir.org), 20.10.2022. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Mental Health, is properly cited. The complete bibliographic information, a link to the original publication on https://mental.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Jones, Steven Atanasova, Dimitrinka Dodd, Susanna Flowers, Susan Rosala-Hallas, Anna Robinson, Heather Semino, Elena Lobban, Fiona Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title | Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title_full | Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title_fullStr | Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title_full_unstemmed | Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title_short | Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study |
title_sort | use of an online forum for relatives of people with psychosis and bipolar disorder: mixed methods study |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9634518/ https://www.ncbi.nlm.nih.gov/pubmed/36264621 http://dx.doi.org/10.2196/35837 |
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