Quality of life in caregivers of toddlers with autism features

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities Pub Date : 2025-03-27 DOI:10.1016/j.ridd.2025.104999

Sarah R. Edmunds , Daina M. Tagavi , Colleen M. Harker , Trent DesChamps , Wendy L. Stone

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Abstract

Understanding factors that contribute to the quality of life (QoL) of primary caregivers of young autistic children can help researchers and clinicians provide high-quality support to caregivers and families. This study examined whether family demographic factors, parenting stress, and caregivers’ perceptions of family-centered healthcare experiences uniquely predict caregivers’ QoL. Participants were caregivers of toddlers with: features of autism (n = 119), other developmental delays (n = 101), and no developmental concerns (n = 264). We hypothesized that higher levels of perceived family-centered care would moderate (ameliorate) the relation between parenting stress and QoL. Higher levels of perceived family-centered care were associated with higher QoL for all groups but did not moderate the negative relation between parenting stress and QoL. Negative effects of parenting stress on QoL were stronger for caregivers of children with autism features compared to other groups. Future research is needed to determine how to provide additional support to caregivers with lower QoL, particularly caregivers who are experiencing income- or parenting-related stress and lower levels of family-centered care. Caregiver QoL is especially important to support across service settings (e.g., primary care, early intervention) during the birth-to-three period, when the process of accessing autism services can be challenging for caregivers.

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自闭症幼儿看护人的生活质量

了解影响年幼自闭症儿童主要照顾者生活质量（QoL）的因素有助于研究人员和临床医生为照顾者和家庭提供高质量的支持。本研究考察了家庭人口因素、养育压力和照顾者对以家庭为中心的医疗保健体验的看法是否能独特地预测照顾者的生活质量。参与者是有自闭症特征（n = 119）、其他发育迟缓（n = 101）和无发育问题（n = 264）的幼儿的看护人。我们假设更高水平的感知到的以家庭为中心的照顾会缓和（改善）养育压力和生活质量之间的关系。高水平的以家庭为中心的护理与高质量的生活质量相关，但不能调节父母压力与生活质量之间的负相关关系。父母教养压力对孤独症儿童生活质量的负面影响在照顾者中强于其他组。未来的研究需要确定如何为生活质量较低的照顾者提供额外的支持，特别是那些经历收入或养育子女相关压力和以家庭为中心的照顾水平较低的照顾者。在出生至三岁期间，照顾者生活质量对于跨服务环境（例如初级保健、早期干预）提供支持尤其重要，因为在这个时期，照顾者获得自闭症服务的过程可能具有挑战性。

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来源期刊

Research in Developmental Disabilities Multiple-

CiteScore

5.50

自引率

6.50%

发文量

178

期刊介绍： Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.