Autism Comes to the Hospital: Experiences of Hospital Care From the Perspectives of Children and Adolescents with Autism Spectrum Disorders, Their Parents, and Health Care Providers

Background: Children and adolescents with Autism Spectrum Disorders (ASD) are a vulnerable population who experience a multitude of mental health, developmental, and health challenges. Because of the complex presentation of ASD, these children and adolescents visit a variety of medical settings. During hospital visits, their special needs may be particularly high. Currently, there is a dearth of research examining children’s experiences with hospitalization and even less on the unique hospital experiences of children and adolescents with ASD and their families.

Objectives: The purpose of this study was to understand the lived experiences of children and adolescents with ASD who were hospitalized, their families, as well as those of paediatric health care providers (HCP) involved in their care. Ultimately, the findings will be used to inform policy and best practice approaches to the delivery of paediatric hospital-based health and mental health services for this unique and under-served segment of the population.

Methods: Semi-structured interviews were conducted with purposively selected children and adolescents with ASD (n = 6), parents (n = 20), and paediatric HCP (n= 12) who were central to their care at one of two large urban Canadian paediatric hospitals. Interpretive description, a qualitative methodology used to explore health research phenomena, was used to guide the analysis.

Results: Children and adolescents with ASD who were hospitalized for medical purposes and their families, indeed, faced unique challenges. Children with ASD experienced communication challenges regardless of their verbal ability, they had acute sensory needs, endured inflexible medical procedures, and expressed difficulties coping with change and waiting for procedures, tests, and appointments. Parents adopted the role of child translator in which they advocated strongly for their child’s unique ASD-related needs. As a result, parents expressed a strong desire to be listened to and intimately involved in their child’s health care decisions. Staff who maintained an open dialogue with the families, demonstrated sensitivity, appreciated the expertise of parents, tailored effective methods of communicating with the child, and displayed flexibility with procedures in small yet meaningful ways provided families with positive hospitalization experiences. Parents and HCP alike touted the value of staff training opportunities not only to understand ASD in general and appropriate support strategies, but more importantly, to develop an appreciation for the uniqueness of each individual and his or her unique hospital needs.

Conclusions: Through their lived experiences, children and adolescents with ASD, parents, and HCP provided important suggestions that will have wide-reaching utility for current hospital practices. As such, these findings are being used to develop a family- and staff-friendly resource to assist families with children with ASD and staff prepare for hospital visits.