基于同伴群体的在线干预项目，以增强抚养残疾儿童家庭的能力：一项使用非随机等待列表对照试验的可行性研究方案。

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

作者信息

Matsuzawa Akemi, Wakimizu Rie, Sato Iori, Fujioka Hiroshi, Nishigaki Kaori, Suzuki Seigo, Iwata Naoko

机构信息

Department of Pediatric Nursing, Graduate School of Health Sciences and Faculty of Medicine, Hokkaido University, Sapporo, Hokkaido, Japan.

Department of Child Health Care Nursing, Division of Health Innovation and Nursing, Institute of Medicine, University of Tsukuba, 1-1-1, Tennodai, Tsukuba, Ibaraki, 305-8575, Japan.

出版信息

Pilot Feasibility Stud. 2022 Nov 2;8(1):233. doi: 10.1186/s40814-022-01190-1.

DOI:10.1186/s40814-022-01190-1

PMID:36324142

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9628164/

Abstract

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.

摘要

背景

抚养残疾儿童的家庭会面临健康和生活方面的风险。因此，有必要支持这些家庭以增强家庭权能，即这些家庭掌控自身生活以及促进协作抚养残疾儿童的能力。这是日本首个聚焦于增强在家抚养残疾儿童家庭权能的在线干预项目。

方法

该项目由四次基于同伴的在线小组会议组成。此外，家庭成员分阶段参与多项活动，在活动中他们发现自身问题、找到解决措施并采取行动，同时与协调员及其他同伴成员一同梳理包括社会资源在内的家庭间关系以及家庭生活状况。本研究是一项非随机、等待列表对照试验。它比较干预组（早期组）和等待列表对照组（延迟组）的结果。参与者按申请顺序被分配到早期组或延迟组。主要结果是家庭权能。其他结果包括照顾者负担、自我报告的利用社会资源的能力、自我同情以及主要照顾者的生活质量（QOL）。在线结果评估的时间线如下：初始评估（时间1 [T1]）在首个早期组项目开始前进行，干预后评估（时间2 [T2]）在早期组完成项目的所有四次会议（4周）后立即（1周内）进行。随访评估（时间3 [T3]）在干预后评估4周后进行。延迟组的时间安排相同，但与早期组相比，延迟组将在等待4周后参加该项目。