Marsack-Topolewski Christina N, Samuel Preethy S
School of Social Work, Eastern Michigan University, 206H Everett L. Marshall Building, Ypsilanti, Ypsilanti, MI, 48197, USA.
College of Pharmacy and Health Sciences, Wayne State University, 259 Mack Avenue, Detroit, MI, 48201, USA.
J Autism Dev Disord. 2024 May 20. doi: 10.1007/s10803-024-06381-8.
Caregiving often presents challenges for parents, particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities.
The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD.
Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more.
As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family's needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.
照顾家人往往给父母带来挑战，尤其是那些有残疾或健康问题的亲人的父母，他们需要和/或想要就业。本研究描述了年迈父母的就业经历，他们在继续平衡有偿工作与持续照顾患有自闭症谱系障碍（ASD）的成年子女之间的关系。本研究的目的是考察患有ASD的成年子女的父母在平衡职业和照顾责任的背景下的生活经历。
本研究采用定性现象学研究方法，描述了51位照顾患有ASD的成年子女的父母的生活经历。这些父母参与了电话访谈，以获取他们在照顾患有ASD的成年子女并提供支持时的职业经历信息。
出现了三个照顾主题，包括：（a）难以平衡照顾与工作职责；（b）工作、不工作或间歇性工作的原因；（c）工作是一种逃避或想要更多地工作。
随着越来越多的ASD患者成年，他们往往在不同程度上依赖家人提供日常支持，父母在兼顾职业和照顾责任时，其就业将继续受到影响。在经济上，通常需要一个或多个家庭成员工作来维持家庭需求，应考虑提供就业支持。作为一个社会，即使对于患有ASD的成年子女，家庭也常常需要做出关于谁来工作、如何工作以及何时工作的选择。
