Edmunds Sarah R, Tagavi Daina M, Harker Colleen M, DesChamps Trent, Stone Wendy L
University of South Carolina, Department of Psychology, USA; University of Washington, Department of Psychology, USA.
University of Washington, Department of Psychology, USA; University of Washington, Department of Psychiatry and Behavioral Sciences, USA.
Res Dev Disabil. 2025 Jun;161:104999. doi: 10.1016/j.ridd.2025.104999. Epub 2025 Mar 27.
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.
了解影响自闭症幼儿主要照料者生活质量(QoL)的因素,有助于研究人员和临床医生为照料者及其家庭提供高质量的支持。本研究考察了家庭人口统计学因素、育儿压力以及照料者对以家庭为中心的医疗体验的认知,是否能独特地预测照料者的生活质量。研究参与者为患有以下情况的幼儿的照料者:具有自闭症特征(n = 119)、其他发育迟缓(n = 101)以及无发育问题(n = 264)。我们假设,更高水平的以家庭为中心的照料感知会调节(改善)育儿压力与生活质量之间的关系。所有组中,更高水平的以家庭为中心的照料感知都与更高的生活质量相关,但并未调节育儿压力与生活质量之间的负相关关系。与其他组相比,自闭症特征儿童的照料者所承受的育儿压力对生活质量的负面影响更强。未来需要开展研究,以确定如何为生活质量较低的照料者提供额外支持,尤其是那些正经历与收入或育儿相关压力以及较低水平的以家庭为中心的照料的照料者。在出生至三岁期间,照料者获取自闭症服务的过程可能颇具挑战性,因此照料者的生活质量在跨服务环境(如初级保健、早期干预)中提供支持时尤为重要。