Autism Comes to the Hospital: The Experiences of Patients with Autism Spectrum Disorder, Their Parents and Health-Care Providers at Two Canadian Paediatric Hospitals

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  • Additional Information
    • Availability:
      SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: [email protected]; Web site: http://sagepub.com
    • Peer Reviewed:
      Y
    • Physical Description:
      9
    • Descriptors:
      Autism
      Hospitals
      Pervasive Developmental Disorders
      Pediatrics
      Children
      Youth
      Experience
      Allied Health Personnel
      Qualitative Research
      Barriers
      Access to Health Care
      Interpersonal Communication
      Perceptual Impairments
      Adolescents
      Foreign Countries
      Semi Structured Interviews
      Parent Attitudes
      Pain
      Communication Problems
    • Geographic Terms:
      Canada
    • Accession Number:
      10.1177/1362361314531341
    • ISSN:
      1362-3613
    • 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.
    • Abstract:
      As Provided
    • Number of References:
      41
    • Publication Date:
      2015
    • Accession Number:
      EJ1058099