Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-04-08 DOI:10.1111/cch.13255

Amber Postma, Marjolijn Ketelaar, Justus van Nispen tot Sevenaer, Zahra Downs, Diane van Rappard, Marian Jongmans, Janneke Zinkstok

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Abstract

Background

Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS.

Method

An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings.

Results

Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support.

Conclusions

This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

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探索针对照顾脑部发育障碍儿童的家长的个别家长互助干预措施：范围审查

背景脑发育障碍（BBDDs）是由自闭症、智力障碍、脑瘫或遗传和神经发育障碍等多种疾病组成的一个庞大的异质性群体。照顾 BBDD 患儿的家长面临着多重挑战，压力增大，出现心理健康问题的风险也很高。针对不同患者群体的同龄父母提供的同伴支持已显示出提供情感、心理和实际支持的潜力。在此，我们旨在探讨有关为照顾 BBDD 儿童的家长提供个人同伴支持（iP2PS）干预的现有文献，以期（1）探索 iP2PS 干预对家长的影响，（2）确定 iP2PS 所面临的挑战和促进因素。方法进行了广泛的文献检索（2023 年 1 月），并进行了专题分析以综合研究结果。结果 14 篇相关文章揭示了 iP2PS 对家长影响的三大主题：(1) 情感和心理健康；(2) 生活质量；(3) 实际问题。四个主题描述了 iP2PS 所面临的挑战和促进因素：(1) 提供支持的益处和负担，(2) 家长配对，(3) 后勤挑战和解决方案，以及 (4) 对提供同伴支持的家长进行培训和监督。结论本综述显示，iP2PS 对家长的情绪和心理健康以及照顾 BBDD 儿童的家庭的整体生活质量有积极影响。个人 P2PS 为同龄家长提供了一个机会，使他们能够为其他面临与自己经历相似挑战的人提供支持。然而，关于不同 iP2PS 方式的益处、根据个人需求提供支持的方法以及对同伴支持提供者进行培训和监督的必要性，仍有许多问题需要解决。未来的研究应着重于定义这些组成部分并评估其益处，以建立有效的 iP2PS，并将其作为标准护理实践提供给家长。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.