title: Parents' experiences of caring for a child with autism spectrum disorder.
abstract: Autism spectrum disorder (ASD) is a developmental disorder involving abnormal communication, repetitive and restrictive interests, and impaired social functioning. ASD can have a profound impact on family life, including the roles and responsibilities that parents assume. In this metasynthesis, we explore the experiences of parents who care for a child with ASD. We undertook a thematic synthesis to integrate qualitative evidence, searching 10 electronic databases and reviewing 4,148 abstracts. We selected 31 articles for inclusion (involving 160 fathers and 425 mothers) and examined the articles using a constant comparative approach. We identified six themes: prediagnosis, diagnosis, family life adjustment, navigating the system, parental empowerment, and moving forward. Our findings can inform the development of programs and services for families, provide insight for health care workers who advocate on behalf of parents, and provide valuable information to parents, particularly those of children newly diagnosed with ASD.
authors.affiliation: Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
authors.forename: Anne-Marie
authors.initials: AM
authors.lastname: DePape
authors.affiliation: Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada slindsay@hollandbloorview.ca.
authors.forename: Sally
authors.initials: S
authors.lastname: Lindsay
mesh_terms: D000328:Adult; D000067877:Autism Spectrum Disorder / Q000175:diagnosis / Q000523:psychology*; D017028:Caregivers; D002675:Child, Preschool; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*
keywords: autism; caregivers / caregiving; families; parenting; qualitative analysis; systematic reviews