一项探索支持成年智力和发育障碍者家长照顾者方法的定性研究。
A Qualitative Study Exploring Ways to Support Parent Caregivers of Adults With Intellectual and Developmental Disabilities.
作者信息
Sanderson Kelli A, Burke Meghan M, Bumble Jennifer L
机构信息
Advanced Studies in Education and Counseling, California State University Long Beach, Long Beach, California, USA.
Department of Special Education, Vanderbilt University, Peabody College, Nashville, Tennessee, USA.
出版信息
J Appl Res Intellect Disabil. 2025 Mar;38(2):e70025. doi: 10.1111/jar.70025.
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.
背景
许多父母是其患有智力和/或发育障碍的成年子女的主要照顾者。虽然照顾可能有诸多益处，但对父母照顾者以及他们患有智力和/或发育障碍的成年子女而言，也可能产生负面后果。鉴于父母为患有智力和/或发育障碍的成年子女提供的关键照料，我们旨在了解父母成为有效照顾者所需的支持。
方法
对315名患有智力和/或发育障碍的成年人的父母完成的一项全国性调查中的定性数据（书面回复）进行主题分析。
结果
数据中出现了四个主题，包括对切实支持、社会支持、残疾服务和资源导航帮助以及未来规划协助的需求。
结论
我们的研究结果表明，需要为患有智力和/或发育障碍的成年人的父母照顾者提供经济补偿，加强残疾服务，并为家庭建立联系和共享资源的空间。
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