Estes Annette, Swain Deanna M, MacDuffie Katherine E
Department of Speech and Hearing Sciences, University of Washington, Seattle, WA, USA.
Department of Psychology, Virginia Polytechnic Institute and State University, Blacksburg, VA, USA.
Pediatr Med. 2019 Jun;2. doi: 10.21037/pm.2019.05.05. Epub 2019 Jun 12.
This review describes the effects of intervention for young children with autism spectrum disorder (ASD) on parents. Like all children, children with ASD bring both negative and positive experiences for parents and families-from increased resource needs, to higher levels of parenting-related stress, to positive personal growth for family members. It is increasingly recognized that, although children with ASD are the primary targets of early ASD intervention, ASD intervention also impacts parents. From the time emerging developmental concerns begin to be identified, through the process of obtaining a diagnosis and initiating services, parents play a central role in addressing the needs of young children with ASD, including implementing and supporting early intervention. Parents experience the impact of intervention directly, through interaction with providers within the health care and educational systems. Parents also experience indirect impacts of ASD intervention due to accelerated developmental progress of children who are benefitting from services and when children make slower progress than expected or have challenging behaviors. Parental stress and psychological well-being are legitimate targets of intervention and compelling research objectives, needing no additional justification. However, parents are also the major contributors to family adaptive functioning-the activities families employ to support positive outcomes for children with ASD (e.g., family-orchestrated child experiences, parent-child interaction, child health and safety functions; Guralnick, 1997). A parent's ability to carry out adaptive functions is, in part, related to their levels of stress and psychological well-being. Thus, there is a transactional process in which parents are both impacted by and have an impact on ASD interventions for their child. Evaluating the effect of ASD intervention on parents is needed to develop new strategies for helping parents and children with ASD reach their full potential. This review will provide an overview of research on the impact of early ASD intervention on parents. Evidence regarding the impact of three types of intervention (i.e., early intensive behavioral intervention, parent-implemented intervention, and programs directly targeting parent stress) on parent well-being and family adaptive functioning will be reviewed. Potential moderators of the impact of ASD intervention on parents and family adaptive functioning will be discussed. We conclude that research on the impact of ASD intervention on parents of young children with ASD is a promising avenue for improving the lives of children with ASD and their families.
本综述描述了针对自闭症谱系障碍（ASD）幼儿的干预措施对家长的影响。与所有孩子一样，患有ASD的孩子给家长和家庭带来了消极和积极的体验——从资源需求增加，到与育儿相关的压力增大，再到家庭成员的积极个人成长。人们越来越认识到，虽然患有ASD的孩子是早期ASD干预的主要目标，但ASD干预也会影响家长。从开始发现孩子出现发育问题，到获得诊断并开始接受服务的过程中，家长在满足患有ASD幼儿的需求方面发挥着核心作用，包括实施和支持早期干预。家长通过与医疗保健和教育系统中的服务提供者互动，直接体验到干预的影响。由于受益于服务的孩子发育进展加速，以及当孩子进展比预期缓慢或出现具有挑战性的行为时，家长也会体验到ASD干预的间接影响。父母的压力和心理健康是合理的干预目标和引人注目的研究对象，无需额外的理由。然而，家长也是家庭适应性功能的主要贡献者——家庭为支持患有ASD的孩子取得积极成果而开展的活动（例如，家庭精心安排的孩子体验、亲子互动、孩子的健康和安全功能；Guralnick，1997）。家长执行适应性功能的能力部分与其压力水平和心理健康状况有关。因此，存在一个相互作用的过程，在此过程中家长既受到孩子ASD干预的影响，又对其产生影响。评估ASD干预对家长的效果，对于制定新策略以帮助患有ASD的家长和孩子充分发挥其潜力是必要的。本综述将概述关于早期ASD干预对家长影响的研究。将回顾关于三种干预类型（即早期密集行为干预、家长实施的干预以及直接针对家长压力的项目）对家长幸福感和家庭适应性功能影响的证据。还将讨论ASD干预对家长和家庭适应性功能影响的潜在调节因素。我们得出结论，关于ASD干预对患有ASD幼儿家长影响的研究，是改善患有ASD的孩子及其家庭生活的一个有前景的途径。
