title: Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals.
abstract: Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.
authors.affiliation: The Hospital for Sick Children, Canada University of Toronto, Canada barbara.muskat@sickkids.ca.
authors.forename: Barbara
authors.initials: B
authors.lastname: Muskat
authors.affiliation: The Hospital for Sick Children, Canada.
authors.forename: Priscilla
authors.initials: P
authors.lastname: Burnham Riosa
authors.affiliation: University of Calgary, Canada.
authors.forename: David B
authors.initials: DB
authors.lastname: Nicholas
authors.affiliation: The Hospital for Sick Children, Canada University of Toronto, Canada.
authors.forename: Wendy
authors.initials: W
authors.lastname: Roberts
authors.affiliation: University of Toronto, Canada The Redpath Centre, Canada.
authors.forename: Kevin P
authors.initials: KP
authors.lastname: Stoddart
authors.affiliation: University of Alberta, Canada Glenrose Rehabilitation Hospital, Canada.
authors.forename: Lonnie
authors.initials: L
authors.lastname: Zwaigenbaum
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D000067877:Autism Spectrum Disorder; D002170:Canada; D002648:Child; D003142:Communication; D005260:Female; D006760:Hospitalization; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents; D036301:Qualitative Research; D012678:Sensation Disorders
keywords: autism spectrum disorder; health care; hospital; medical; paediatric; qualitative methods