Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: Jones, Steven, Atanasova, Dimitrinka, Dodd, Susanna, Flowers, Susan, Rosala-Hallas, Anna, Robinson, Heather, Semino, Elena, Lobban, Fiona
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
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
_version_ 1784824510403313664
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
work_keys_str_mv AT jonessteven useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT atanasovadimitrinka useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT doddsusanna useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT flowerssusan useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT rosalahallasanna useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT robinsonheather useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT seminoelena useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy
AT lobbanfiona useofanonlineforumforrelativesofpeoplewithpsychosisandbipolardisordermixedmethodsstudy