Seeking Patient-and Family-Centered Care: The Experiences of Families of Children with an Autism Spectrum Disorder

Abstract

Children with an autism spectrum disorder (ASD) have a higher annual mean number of total clinic, pediatric, and psychiatric outpatient visits, and inpatient and outpatient hospitalizations when compared to children without ASD. Families of individuals with ASD observe and experience specific barriers to medical care. Using a mixedmethods approach and interpretive phenomenological analysis (IPA), the perspectives of 40 families were gathered through a survey to gain a better understanding of positive and negative experiences, and the implications for healthcare providers and medical settings. Among the themes identified, families shared the need for healthcare providers to be more knowledgeable and trained about the heterogeneity of ASD, to presume competence and to view families as allies in facilitating medical encounters. As a result of these improvements, families also hope that healthcare providers develop greater compassion for families of children with ASD.