Cargando…

Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study

BACKGROUND: Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential...

Descripción completa

Detalles Bibliográficos
Autores principales: Gerritzen, Esther Vera, McDermott, Orii, Orrell, Martin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297145/
https://www.ncbi.nlm.nih.gov/pubmed/35788470
http://dx.doi.org/10.2196/38379
_version_ 1784750415619817472
author Gerritzen, Esther Vera
McDermott, Orii
Orrell, Martin
author_facet Gerritzen, Esther Vera
McDermott, Orii
Orrell, Martin
author_sort Gerritzen, Esther Vera
collection PubMed
description BACKGROUND: Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE: Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS: Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. RESULTS: The study is funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie Actions – Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. CONCLUSIONS: The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38379
format Online
Article
Text
id pubmed-9297145
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher JMIR Publications
record_format MEDLINE/PubMed
spelling pubmed-92971452022-07-21 Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study Gerritzen, Esther Vera McDermott, Orii Orrell, Martin JMIR Res Protoc Protocol BACKGROUND: Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE: Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS: Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. RESULTS: The study is funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie Actions – Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. CONCLUSIONS: The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38379 JMIR Publications 2022-07-05 /pmc/articles/PMC9297145/ /pubmed/35788470 http://dx.doi.org/10.2196/38379 Text en ©Esther Vera Gerritzen, Orii McDermott, Martin Orrell. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 05.07.2022. 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 Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Gerritzen, Esther Vera
McDermott, Orii
Orrell, Martin
Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title_full Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title_fullStr Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title_full_unstemmed Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title_short Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study
title_sort development of best practice guidance on online peer support for people with young onset dementia: protocol for a mixed methods study
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297145/
https://www.ncbi.nlm.nih.gov/pubmed/35788470
http://dx.doi.org/10.2196/38379
work_keys_str_mv AT gerritzenesthervera developmentofbestpracticeguidanceononlinepeersupportforpeoplewithyoungonsetdementiaprotocolforamixedmethodsstudy
AT mcdermottorii developmentofbestpracticeguidanceononlinepeersupportforpeoplewithyoungonsetdementiaprotocolforamixedmethodsstudy
AT orrellmartin developmentofbestpracticeguidanceononlinepeersupportforpeoplewithyoungonsetdementiaprotocolforamixedmethodsstudy