Background

Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden.

Methods

Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental).

Results

Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges.

Conclusions

Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

中文翻译：

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自闭症成人日常生活技能与父母照顾者负担之间关系的实证评估

背景

尽管养育孩子很快乐，但日常照顾患有自闭症谱系障碍 (ASD) 的儿童的负担可能是巨大且持续的。父母可以为患有自闭症谱系障碍的孩子提供持久的照顾。鉴于大多数患有自闭症谱系障碍 (ASD) 的人在成年后仍留在家里，因此日常生活活动 (ADL) 方面的帮助通常由父母承担。为难以完成 ADL 的成年子女提供持续支持可以增加父母的照顾需求。因此，本研究的目的是探讨患有 ASD 的成年人执行 ADL 的能力与父母对照顾者负担的看法之间的关系。

方法

使用 Qualtrics 对 320 名患有自闭症谱系障碍 (ASD) 成人的年迈父母以电子方式收集的横断面多州数据进行了定量分析。回归模型适合检验 ADL 挑战与看护者总负担及其四个领域（情感、财务、时间依赖和发展）之间的关联。

结果

即使在调整了父母的健康和行为挑战之后，当成年子女在 ADL 上的依赖性较低时，父母对照顾者负担的看法也会下降，特别是时间依赖性和发育负担。

结论

研究结果支持需要采取以家庭为中心的干预措施，以提高患有自闭症谱系障碍的成年人独立执行日常生活活动的能力。