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.
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Parents often found themselves in the role of advocate and expert on their child's needs.
“Parents often found themselves in the role of advocate and expert on their child's needs (Muskat et al., 2015).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2015
Parents recommended that communication needed to be improved across the healthcare system and across the different HCPs.
“Parents recommended that communication needed to be improved across the healthcare system and across the different HCPs (Muskat et al., 2015).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2015
Recommendations from the studies included that practitioners should have access to a guide or formal resource kit, which they can access to help plan and understand what some of the issues are for children with autism.
“Recommendations from the studies included that practitioners should have access to a guide (Nicholas et al., 2016) or formal resource kit (Muskat et al., 2015), which they can access to help plan and understand what some of the issues are for children with autism.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2015
Parents described the need for a tailored, flexible and individualised approach during health visits.
“Parents described the need for a tailored, flexible (Muskat et al., 2015) and individualised approach during health visits (Brown & Brown, 2014; Bultas, 2012).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2015
Consultations happening in more than one room and the consequent transitions required adapting to change each time.
“Consultations happening in more than one room and the consequent transitions, which required adapting to change each time (Muskat et al., 2015).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2015
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Self-citation
- Authors
- Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L.
- Affiliations
- University of Toronto (CA)
- The Hospital for Sick Children, Canada
- University of Calgary (CA)
- University of Alberta (CA)
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2014-05-08
- Volume
- 19
- Issue
- 4
- Pages
- 482-490
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2144388425
- Cited by
- 184
- References
- 44
- Citations by year
- 2026: 12 · 2025: 21 · 2024: 21 · 2023: 18 · 2022: 14 · 2021: 43 · 2020: 14 · 2019: 15 · 2018: 11 · 2017: 6 · 2016: 6 · 2015: 2 · 2014: 1
- FWCI
- 2.79
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Keywords
- autism spectrum disorder, hospital experience, pediatric hospital care, patient experience, parental experiences, health professionals' experiences, communication difficulties, sensory challenges, hospital accommodation
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Attitude of Health Personnel, Attitude to Health, Canada, Child, Communication, Female, Hospitalization, Hospitals, Pediatric, Humans, Male, Middle Aged, Parents, Sensation Disorders, Qualitative Research
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