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家庭健康伙伴在区域网络结构(NEST)中:慢性病和残疾儿童父母的一项非随机对照试验。

Family health partners in regional network structures (NEST): A non-randomized controlled trial among parents of chronically ill and disabled children.

机构信息

Institute of Medical Sociology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Leibniz Institute for Resilience Research, Mainz, Germany.

出版信息

PLoS One. 2023 Jul 17;18(7):e0288435. doi: 10.1371/journal.pone.0288435. eCollection 2023.

Abstract

BACKGROUND

The overarching project goal is to evaluate the effectiveness of a cross-sectoral and cross-service provider offering professional support for families with chronically ill and disabled children: so-called Family Health Partners (in German: 'Familien-Gesundheits-Partner' or FGP). This needs-oriented service, which is anchored in regional networks, aims to provide 'holistic' support for families with children in need of care.

METHODS

We are carrying out a non-randomized controlled trial with four points of measurement (t0-t3 in 18 months), beginning in January 2022. Both intervention and control group include 102 families. Primary outcome measure is the quality of life, secondary outcomes are resilience factors and associated measures as well as the access to care. Multilevel regression models will be used to analyze the longitudinal data.

DISCUSSION

The strength of this study is that it looks at the health and resilience of all family members involved by examining how a FGP can influence the entire family system with regard to increasing quality of life, resilience and self-efficacy. The network structures of FGP also open up better to previously unknown regional supply offers. There are, however, a number of limitations (e.g. type of outcomes, sample size).

TRIAL REGISTRATION

This study was first registered on the German Clinical Trials Register before enrolment of participants started (ID: DRKS00027465, 4 January 2022). In order to promote its dissemination, it was also retrospectively registered on ClinicalTrials.gov (ID: NCT05418205, 14 June 2022).

摘要

背景

该项目的总体目标是评估为患有慢性病和残疾儿童的家庭提供跨部门和跨服务提供者的专业支持的有效性:即所谓的家庭健康伙伴(德语:“Familien-Gesundheits-Partner”或 FGP)。这种以需求为导向的服务以区域网络为基础,旨在为有需要的家庭提供“整体”支持。

方法

我们正在进行一项非随机对照试验,共进行四次测量(18 个月内的 t0-t3),从 2022 年 1 月开始。干预组和对照组均包括 102 个家庭。主要结局指标是生活质量,次要结局指标是恢复力因素和相关指标以及获得的护理。将使用多层回归模型分析纵向数据。

讨论

这项研究的优势在于,它通过研究 FGP 如何影响整个家庭系统,以提高生活质量、恢复力和自我效能感,来考察所有相关家庭成员的健康和恢复力。FGP 的网络结构还为以前未知的区域供应提供了更好的机会。然而,也存在一些限制(例如,结果类型、样本量)。

试验注册

该研究在开始招募参与者之前,首先在德国临床试验注册处进行了注册(ID:DRKS00027465,2022 年 1 月 4 日)。为了促进其传播,它还在 ClinicalTrials.gov 上进行了回顾性注册(ID:NCT05418205,2022 年 6 月 14 日)。

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