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一项基于同伴群体的在线干预计划对增强残疾儿童家庭在家中的能力的有效性。

Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home.

作者信息

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

机构信息

Department of Child Health and Development Nursing, Division of Health Innovation and Nursing, Faculty of Medicine, University of Tsukuba, Tsukuba-city, Japan.

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

出版信息

Front Pediatr. 2022 Oct 24;10:929146. doi: 10.3389/fped.2022.929146. eCollection 2022.

Abstract

BACKGROUND

The empowerment of families raising children with disabilities (CWD) is crucial in maintaining their health. We developed an evidence-based, family empowerment intervention program focusing on social resource utilization and reducing care burden.

OBJECTIVE

This study aimed to determine the program's effectiveness in promoting family empowerment.

METHODS

We compared an intervention group that started the online intervention program a week after initial evaluation and a group that received delayed intervention (waitlist-controlled group) at three time points: initial (T1), post-course (T2), and follow-up (T3). The required sample size was 52.

RESULTS

There were 60 participants who applied to the program. One participant dropped out due to scheduling issues, and the others were assigned to either the intervention group ( = 29) or the waitlist-controlled group ( = 30). Those who responded to the baseline questionnaire (T1: 26 from the intervention group; 29 from the waitlist-controlled group) comprised the final sample. Among them, 20 members of the intervention group and 20 of the waitlist-controlled group attended all four sessions (completion rates of 77% and 69%, respectively). The attendance rate for sessions 1-4 was 94%, 89%, 81%, and 83%, respectively. The participant numbers in each session ranged from 5 to 18 per month. The baseline outcome score did not differ between the groups. The primary outcome, family empowerment, measured using the family empowerment scale (FES), was significantly higher at T2 for the intervention group than in the waitlist-controlled group and was sustained in the sensitivity analysis. The intervention group's FES, in the family relationships (FA) and relationships with service systems (SS) subdomains, increased significantly, unlike involvement with the community (SP). The intervention group experienced lower care burden and higher self-compassion, especially in the isolation and over-identification items of the self-compassion scale-short form (SCS-SF). The intervention group's FES (total, FA, SS) and SCS-SF (total, common humanity, isolation) changed significantly between T1 and T2, and all, except common humanity, were sustained up to T3; this group's FES (SP) and SCS (negative score, over-identification) changed significantly between T1 and T3. The waitlist-controlled group's FES (total, FA) and SCS (total) changed significantly and were sustained between T2 and T3.

CONCLUSIONS

The developed intervention program promotes family empowerment in families of CWD.

CLINICAL TRIAL REGISTRATION

This study is registered as a clinical trial in the UMIN Clinical Trials Registry (https://center6.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422, UMIN000044172).

摘要

背景

增强抚养残疾儿童家庭(CWD)的能力对于维持其健康至关重要。我们制定了一项基于证据的家庭赋权干预计划,重点关注社会资源利用和减轻护理负担。

目的

本研究旨在确定该计划在促进家庭赋权方面的有效性。

方法

我们比较了一个在初始评估后一周开始在线干预计划的干预组和一个在三个时间点接受延迟干预的组(等待名单对照组):初始(T1)、课程结束后(T2)和随访(T3)。所需样本量为52。

结果

有60名参与者申请了该计划。一名参与者因日程安排问题退出,其他参与者被分配到干预组(n = 29)或等待名单对照组(n = 30)。对基线问卷做出回应的人(T1:干预组26人;等待名单对照组29人)构成最终样本。其中,干预组的20名成员和等待名单对照组的20名成员参加了所有四节课程(完成率分别为77%和69%)。第1 - 4节课程的出勤率分别为94%、89%、81%和83%。每月各节课程的参与者人数在5至18人之间。两组的基线结果得分没有差异。使用家庭赋权量表(FES)测量的主要结果,即家庭赋权,在T2时干预组显著高于等待名单对照组,并且在敏感性分析中得以维持。干预组在家庭关系(FA)和与服务系统关系(SS)子领域的FES显著增加,与社区参与(SP)不同。干预组的护理负担较低,自我同情较高,尤其是在自我同情量表简表(SCS - SF)的孤立和过度认同项目中。干预组的FES(总分、FA、SS)和SCS - SF(总分、共同人性、孤立)在T1和T2之间有显著变化,并除共同人性外,所有变化在T3时都得以维持;该组的FES(SP)和SCS(消极得分、过度认同)在T1和T3之间有显著变化。等待名单对照组的FES(总分、FA)和SCS(总分)有显著变化,并在T2和T3之间得以维持。

结论

所制定的干预计划促进了CWD家庭的家庭赋权。

临床试验注册

本研究已在UMIN临床试验注册中心注册为临床试验(https://center6.umin.ac.jp/cgi - open - bin/ctr/ctr_view.cgi?recptno = R000050422,UMIN000044172)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a2ab/9638189/470f7a76ad11/fped-10-929146-g001.jpg

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