Parents' experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence.

Abstract

Introduction: A comprehensive review to identify key topics and to discern patterns in the perspectives of parents of children with autism spectrum disorder (ASD) can improve understanding of the knowledge flow among stakeholders, thereby guiding future educational strategies. This systematic review and metasynthesis characterized the experiences of parents who have a child with ASD using qualitative studies in the literature.

Method: A predefined search strategy across five databases was conducted in accordance with PRISMA guidelines. A metaaggregative approach was used to synthesize extracted data into themes that were condensed into overarching categories.

Results: Ten themes and nine groups of key stakeholders were identified across 12 studies. Themes were grouped into four categories: behaviors, socioemotional impacts, structural needs, and gaps in knowledge about ASD. Gaps in knowledge about ASD was a pervasive theme that played a critical role in interactions between stakeholders. Families of children with ASD make life adaptations in a variety of areas, including structuring activities around ASD, physical modifications to homes for safety, intentional social isolation, increased financial expenses, and homeschooling.

Discussion: Parents must educate themselves on how to manage all aspects of ASD, and in doing so, often become experts not only in the individual needs of their own child and families, but in ASD more broadly. Family experiences contextualize key stakeholder knowledge for application across multiple systems, including education and health care services, home, and the community. Educational interventions that integrate family, service provider, and community perspectives are needed to address the stakeholder gap in knowledge. (PsycInfo Database Record (c) 2022 APA, all rights reserved).