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Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial

BACKGROUND: Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children w...

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Autores principales: Matsuzawa, Akemi, Wakimizu, Rie, Sato, Iori, Fujioka, Hiroshi, Nishigaki, Kaori, Suzuki, Seigo, Iwata, Naoko
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9628164/
https://www.ncbi.nlm.nih.gov/pubmed/36324142
http://dx.doi.org/10.1186/s40814-022-01190-1
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author Matsuzawa, Akemi
Wakimizu, Rie
Sato, Iori
Fujioka, Hiroshi
Nishigaki, Kaori
Suzuki, Seigo
Iwata, Naoko
author_facet Matsuzawa, Akemi
Wakimizu, Rie
Sato, Iori
Fujioka, Hiroshi
Nishigaki, Kaori
Suzuki, Seigo
Iwata, Naoko
author_sort Matsuzawa, Akemi
collection PubMed
description BACKGROUND: Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan. METHOD: The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group. DISCUSSION: The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program. TRIAL REGISTRATION: The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40814-022-01190-1.
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spelling pubmed-96281642022-11-02 Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial Matsuzawa, Akemi Wakimizu, Rie Sato, Iori Fujioka, Hiroshi Nishigaki, Kaori Suzuki, Seigo Iwata, Naoko Pilot Feasibility Stud Study Protocol BACKGROUND: Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan. METHOD: The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group. DISCUSSION: The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program. TRIAL REGISTRATION: The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40814-022-01190-1. BioMed Central 2022-11-02 /pmc/articles/PMC9628164/ /pubmed/36324142 http://dx.doi.org/10.1186/s40814-022-01190-1 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Study Protocol
Matsuzawa, Akemi
Wakimizu, Rie
Sato, Iori
Fujioka, Hiroshi
Nishigaki, Kaori
Suzuki, Seigo
Iwata, Naoko
Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title_full Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title_fullStr Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title_full_unstemmed Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title_short Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
title_sort peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9628164/
https://www.ncbi.nlm.nih.gov/pubmed/36324142
http://dx.doi.org/10.1186/s40814-022-01190-1
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