作为另一个孩子--罕见病儿童兄弟姐妹的生活质量和心理健康系统回顾

IF 2.9 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities Pub Date : 2024-11-04 DOI:10.1016/j.ridd.2024.104868

Johannes Boettcher , Fabian Kröger , Nele Reinsberg , Silke Wiegand-Grefe , Holger Zapf

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引用次数: 0

摘要

背景罕见病患儿的兄弟姐妹在家庭动态及其兄弟姐妹的患病经历中发挥着至关重要的作用，但这一作用却常常被忽视。本系统综述旨在总结和评估在这种特殊情况下有关兄弟姐妹生活质量（QoL）和心理健康结果的现有研究。方法我们在六个数据库中进行了系统的文献检索，包括有关罕见病患儿兄弟姐妹的定量研究。共有 37 篇报告（34 项研究）符合纳入标准。我们将兄弟姐妹的 QoL 和心理健康与常模样本及其患有罕见病的兄弟姐妹进行了比较。系统调查了影响兄弟姐妹 QoL 和心理健康的风险因素。结果研究结果表明，与常模数据相比，罕见病患儿兄弟姐妹的 QoL 和心理健康水平有所下降，但结果不一。与疾病特异性风险因素相比，父母家庭压力因素等社会心理风险因素在罕见病患儿兄弟姐妹的生活质量和心理健康方面发挥着特殊作用。结论医疗服务提供者应考虑并解决社会心理因素对罕见病患儿兄弟姐妹生活质量和心理健康的潜在影响。此外，还将讨论弥合现有研究差距的机会以及推进该领域理论驱动研究的建议。

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Being the other child - A systematic review on the quality of life and mental health of siblings of children with rare diseases

Background

Siblings of children with rare diseases play a crucial yet often overlooked role in the family dynamic and their sibling's illness experience. This systematic review aims to synthesize and evaluate existing research on the Quality of Life (QoL) and mental health outcomes of siblings in this unique context.

Methods

We performed a systematic literature search in six databases, including quantitative studies on siblings of children with rare diseases. A total of 37 reports (34 studies) met the inclusion criteria. Siblings' QoL and mental health were compared to normative samples and their siblings with a rare disease. Risk factors for siblings' QoL and mental health were systematically investigated. Moreover, methodological quality and risk of bias were analyzed.

Results

The findings revealed that siblings of children with rare diseases experience reduced QoL and mental health compared to norm data, although results have been mixed. Psychosocial risk factors like parental family stress factors, compared to disease-specific risk factors, play a particular role in the QoL and mental health of siblings of children with rare diseases.

Conclusion

Healthcare providers should consider and address the potential psychosocial impact on QoL and mental health in siblings of children with rare diseases. Additionally, opportunities to bridge existing research gaps and suggestions for advancing theory-driven research in this area will be discussed.

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来源期刊

Research in Developmental Disabilities Multiple-

CiteScore

5.50

自引率

6.50%

发文量

178

期刊介绍： Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.