Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-01-06 DOI:10.1111/jar.70005

Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J. Wilson

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Abstract

Background

Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children.

Method

A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines.

Findings

Seventeen qualitative studies were included. Three synthesised findings were identified: ‘Challenges and rewards of being a parent carer’, ‘The real cost of caregiver burden’ and ‘Surrendering self for duty – the mothers role’.

Conclusion

Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.

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父母在照顾智障儿童时的生活质量经验：一项Meta-Aggregation系统回顾。

背景：中度至重度智力残疾儿童的父母在提供直接照顾方面发挥着至关重要的作用，但往往表现出父母压力增加和生活质量下降。本综述从父母照顾年幼和成年子女的经验中探讨了感知生活质量。方法：采用Joanna Briggs研究所的meta-aggregation方法进行定性系统评价，并根据PRISMA指南进行报告。结果：纳入17项定性研究。研究人员综合了三个方面的发现：“做一个照顾父母的人的挑战和回报”、“照顾父母的真正成本”和“为责任奉献自己——母亲的角色”。结论：中度至重度智力残疾儿童的父母报告说，他们自己和家人的生活质量下降，与照顾负担相关的身心健康问题增加。需要进一步的研究来确定需要哪些有效的支持系统和干预措施来减轻父母照顾者的负担。

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.