A Qualitative Study Exploring Ways to Support Parent Caregivers of Adults With Intellectual and Developmental Disabilities

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-12 DOI:10.1111/jar.70025

Kelli A. Sanderson, Meghan M. Burke, Jennifer L. Bumble

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引用次数: 0

Abstract

Background

Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the critical care that parents provide to their adult children with intellectual and/or developmental disabilities, we aimed to understand the supports parents need to be effective caregivers.

Method

Qualitative data (write-in responses) from a national survey completed by 315 parents of adults with intellectual and/or developmental disabilities were analysed using thematic analysis.

Results

Four themes emerged from the data, including the need fortangible support, social support, help navigating disability services and resources, and assistance with future planning.

Conclusions

Our findings point to the need for financial compensation for parent caregivers of adults with intellectual and/or developmental disabilities, enhanced disability services, and spaces for families to connect and share resources.

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一项质性研究探讨如何支持智力和发育障碍成人的父母照顾者

许多父母是他们患有智力和/或发育障碍的成年子女的主要照顾者。虽然照顾可以带来很多好处，但也可能对父母照顾者产生负面影响，进而对他们患有智力和/或发育障碍的成年子女产生负面影响。考虑到父母对患有智力和/或发育障碍的成年子女提供的关键护理，我们的目的是了解父母需要哪些支持才能成为有效的照顾者。方法采用专题分析方法，对315名智力和/或发育性残疾成人父母所完成的全国调查的定性数据（书面回答）进行分析。结果从数据中得出了四个主题，包括对有形支持的需求、社会支持、帮助导航残疾服务和资源以及帮助未来规划。结论：我们的研究结果表明，需要对智力和/或发育障碍成人的父母照顾者进行经济补偿，加强残疾服务，并为家庭联系和共享资源提供空间。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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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.