成人自闭症患者日常生活技能与父母照顾者负担的相关性的实证评估。
Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden.
机构信息
School of Social Work, Eastern Michigan University, Ypsilanti, Michigan, United States of America.
Occupational Therapy Program, Department of Health Care Sciences, Wayne State University, Detroit, Michigan, United States of America.
出版信息
PLoS One. 2021 Jan 5;16(1):e0244844. doi: 10.1371/journal.pone.0244844. eCollection 2021.
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.
背景
尽管为人父母有喜悦，但照顾自闭症谱系障碍（ASD）儿童的日常负担可能会让人不堪重负且持续存在。家长可以期望为他们患有 ASD 的孩子提供持久的照顾。鉴于大多数自闭症谱系障碍（ASD）患者在成年后仍留在自己的家庭中，他们经常需要父母帮助日常生活活动（ADL）。为难以完成 ADL 的成年子女提供持续支持会增加父母的照顾需求。因此，本研究旨在探讨 ASD 成年人完成 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 电子收集的来自 320 名 ASD 成年子女的老龄化父母的横断面多状态数据进行定量分析。回归模型用于检验 ADL 挑战与总照顾者负担及其四个领域（情绪、财务、时间依赖性和发展）之间的关联。
结果
即使在调整了父母的健康和行为挑战后，当成年子女在 ADL 方面依赖性较低时，父母对照顾者负担的看法（尤其是时间依赖性和发展性负担）会减轻。
结论
研究结果支持以家庭为中心的干预措施的必要性，以提高 ASD 成年人独立完成 ADL 的能力。
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