ABSTRACT

The expanding population of adults with autism spectrum disorder (ASD) will increase the number of aging parents who often assume the role of primary caregivers. Among aging caregivers of adults with ASD, compound caregiving (caring for additional family members) has become an increasingly common scenario. However, limited research has examined the burden of compound caregivers and little is known about the specific dimensions of burden among this population. The present study aims to compare differences between compound 1, compound 2, and noncompound caregivers on specific dimensions of caregiver burden associated with adult children with ASD. Using a cross-sectional design, data were collected from 320 caregivers aged 50 and older through a web-based survey. Four dimensions of burden (time dependence, developmental, emotional, and financial) were compared using MANOVA. Compound 1 and noncompound caregivers experienced lower levels of time dependence burden than compound 2 caregivers. In terms of developmental burden, the social life of compound 2 caregivers was more affected by caregiving compared to noncompound caregivers. The findings have practice implications for identifying caregivers’ multiple responsibilities and the multi-faceted impact of caregiving, and prioritizing interventions for compound caregivers and its subpopulations to reduce their time and developmental burden.

摘要

自闭症谱系障碍 (ASD) 成年人的不断扩大将增加经常担任主要照顾者角色的年迈父母的数量。在患有 ASD 成人的老年照护者中，复合照护（照顾额外的家庭成员）已成为一种越来越普遍的情况。然而，有限的研究检查了复合护理人员的负担，并且对该人群的具体负担范围知之甚少。本研究旨在比较复合 1、复合 2 和非复合照顾者在与成年 ASD 儿童相关的照顾者负担的特定维度上的差异。使用横断面设计，通过基于网络的调查从 320 名 50 岁及以上的护理人员那里收集数据。负担的四个维度（时间依赖、发展、情绪、和财务）使用 MANOVA 进行比较。复合 1 和非复合护理人员的时间依赖性负担低于复合 2 护理人员。在发育负担方面，与非复合型照护者相比，复合型照护者的社会生活受到照护的影响更大。研究结果对于确定照顾者的多重责任和照顾的多方面影响具有实践意义，并优先考虑对复合照顾者及其亚群进行干预以减少他们的时间和发展负担。