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神经发育障碍患者同胞的成长经历对无病同胞生活质量的影响:范围综述。

Impact of growing up with a sibling with a neurodevelopmental disorder on the quality of life of an unaffected sibling: a scoping review.

机构信息

Program of Child Health Evaluation Sciences, The Hospital for Sick Children Research Institute, Toronto, Canada.

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.

出版信息

Disabil Rehabil. 2021 Feb;43(4):586-594. doi: 10.1080/09638288.2019.1615563. Epub 2019 May 18.

DOI:10.1080/09638288.2019.1615563
PMID:31106599
Abstract

PURPOSE

Growing up with a sibling with a neurodevelopmental disorder can have positive and negative effects on personal, social and emotional well-being; however, little is known about the impacts on unaffected siblings' quality of life. The purpose of this review was to synthesize evidence from studies evaluating the quality of life of unaffected siblings of children with neurodevelopmental disorders.

METHOD

A systematic search was conducted on four databases to identify studies reporting the quality of life of unaffected siblings of children with neurodevelopmental disorders.

RESULTS

Seven studies met the inclusion criteria. Four studies reported impaired quality of life in unaffected siblings of children with neurodevelopmental disorder while three studies reported not the impaired quality of life. Parents reported the lower quality of life for children with or without neurodevelopmental disorders compared to children's self-reports.

CONCLUSIONS

This review provides the mixed evidence on the quality of life in unaffected siblings of children with neurodevelopmental disorders, and identifies the substantial gap in the research regarding the impacts of children's neurodevelopmental disorders on the quality of life of their unaffected siblings. Assessment of unaffected siblings' quality of life is necessary to identify those who may be at risk and to provide support programs for physical and emotional well-being. Future research examining the quality of life of unaffected siblings across a variety of NDD is needed.Implications for rehabilitationGrowing up with a sibling with a neurodevelopmental disorder influences the personal and social development of the unaffected child.Measuring quality of life can have a meaningful impact on the lives of unaffected siblings of children with neurodevelopmental disorders and their families. Evidence generated from such studies can be used by healthcare providers such as physicians, nurses, psychologists, and social workers to recommend appropriate supports to the family and siblings.

摘要

目的

在患有神经发育障碍的兄弟姐妹的陪伴下成长,会对个人、社交和情感健康产生积极和消极的影响;然而,对于未受影响的兄弟姐妹的生活质量的影响知之甚少。本综述的目的是综合评估患有神经发育障碍儿童的未受影响的兄弟姐妹的生活质量的研究证据。

方法

在四个数据库中进行了系统搜索,以确定报告患有神经发育障碍儿童的未受影响的兄弟姐妹的生活质量的研究。

结果

符合纳入标准的有 7 项研究。四项研究报告患有神经发育障碍儿童的未受影响的兄弟姐妹的生活质量受损,而三项研究报告未受影响的兄弟姐妹的生活质量未受损。与儿童自我报告相比,父母报告患有或不患有神经发育障碍的儿童的生活质量较低。

结论

本综述提供了关于患有神经发育障碍儿童的未受影响的兄弟姐妹的生活质量的混合证据,并确定了关于儿童神经发育障碍对其未受影响的兄弟姐妹的生活质量的影响的研究中的实质性差距。评估未受影响的兄弟姐妹的生活质量对于确定那些可能处于风险中的人并为身体和情感健康提供支持计划是必要的。需要进行未来的研究,以研究各种神经发育障碍儿童的未受影响的兄弟姐妹的生活质量。

对康复的影响

在患有神经发育障碍的兄弟姐妹的陪伴下成长会影响未受影响的孩子的个人和社交发展。衡量生活质量可以对患有神经发育障碍儿童的未受影响的兄弟姐妹及其家庭的生活产生有意义的影响。从这些研究中产生的证据可以被医疗保健提供者(如医生、护士、心理学家和社会工作者)用来向家庭和兄弟姐妹推荐适当的支持。

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