比较唐氏综合征、自闭症谱系障碍和脑瘫成年子女的父母所感知到的支持需求差异。
Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy.
作者信息
Lee Chung Eun, Burke Meghan M, Arnold Catherine K, Owen Aleksa
机构信息
University of Illinois at Urbana-Champaign, Urbana-Champaign, Illinois.
University of Illinois at Chicago, Chicago, Illinois.
出版信息
J Appl Res Intellect Disabil. 2019 Jan;32(1):194-205. doi: 10.1111/jar.12521. Epub 2018 Aug 12.
BACKGROUND
Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families.
METHOD
Data were collected via a national survey in the United States with 189 parents of adults with IDD.
RESULTS
Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers.
CONCLUSION
The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs.
背景
父母在照顾残疾子女时常常面临诸多障碍。在儿童时期，支持需求各不相同，唐氏综合征患儿的家庭通常报告较少的照料挑战。然而，尚不清楚成年后支持需求是否存在差异。本研究比较了患有唐氏综合征（DS）、自闭症谱系障碍（ASD）和脑瘫（CP）的成年患者的父母在其患有智力和发育障碍（IDD）的子女及其家庭的支持需求方面的情况。
方法
通过在美国进行的一项全国性调查收集了189名患有IDD的成年患者的父母的数据。
结果
通过定量和定性分析，患有DS的成年患者的父母（与患有CP和ASD的成年患者的父母相比）报告了显著更多的娱乐、自然支持、更正规的服务以及更少的未来规划障碍。
结论
结果表明，在支持需求方面，DS优势在成年期可能依然存在。需要更多研究来了解不同类型的支持需求。
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