INTRODUCTION: Parents of children with autism spectrum disorder (ASD) face challenges in many areas of life while raising their children. The variability of studies on the experiences of these parents would benefit from a comprehensive review to identify key recurring topics and thus provide an opportunity to discern patterns in the perspectives. This systematic review and meta-synthesis 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.
RESULTS: A gap in knowledge about ASD was a pervasive theme that underscored all themes and appeared to play a critical role in interactions between key stakeholders. Social interaction was a widespread concern that led to stigma, social isolation, and psychological impacts. 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. The developed conceptual model highlights a need for training interventions that integrate family, service provider, and community perspectives to address the stakeholder gap in knowledge.
