Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder
Abstract
Care for children with autism spectrum disorder (ASD) in the emergency department (ED) is increasingly recognized as difficult. Communication, sensory and behavioral challenges in a high intensity environment pose risks for negative experiences and outcomes. Through semi-structured interviews, parents (n = 31) and their children (n = 4) with ASD shared their perspectives on ED care. Participants identified issues that negatively affected care experiences, including care processes, communication issues, insufficient staff knowledge about ASD, and inadequate partnership with parents. Elements contributing to an improved ED experience were also cited, including staff knowledge about ASD, child- and family-centered care, and clarity of communication. Findings inform an emerging model of ED care. Recommendations for capacity building and practice development are offered.
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Nicholas et al. (2016) described positive experiences where HCPs displayed having the knowledge and understanding during a healthcare visit.
“In contrast, Nicholas et al., (2016) described positive experiences where HCPs displayed having the knowledge and understanding during a healthcare visit.”
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 Nicholas et al., 2016
Parents attributed the challenges to the invisible nature of the disability of autism, which meant that HCPs often did not understand the need for a modified approach.
“Parents attributed the challenges to the invisible nature of the disability of autism (Nicholas et al., 2016), which meant that HCPs often did not understand the need for a modified approach.”
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 Nicholas et al., 2016
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 Nicholas et al., 2016
Parents articulated experiences of not being listened to and experiencing a dismissive response from HCPs.
“Parents articulated experiences of not being listened to and experiencing a dismissive response from HCPs (Nicholas et al., 2016).”
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 Nicholas et al., 2016
A display in the waiting area regarding suggested waiting times was recommended.
“A display in the waiting area regarding suggested waiting times (Nicholas et al., 2016).”
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 Nicholas et al., 2016
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References 23 · Cited by 74
- Authors
- Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Kilmer, C., Greenblatt, A., Roberts, W., & Cohen-Silver, J.
- Affiliations
- University of Calgary (CA)
- University of Alberta (CA)
- Hospital for Sick Children (CA)
- University of Toronto (CA)
- Corresponding author
- Nicholas, David B.
- ORCID
- Venue
- Social Work in Health Care
- Publisher
- Informa UK Limited
- Published
- 2016-06-17
- Volume
- 55
- Issue
- 6
- Pages
- 409-426
- ISSN
- 0098-1389 (ISSN-L)
- 1541-034X
- OpenAlex
- W2426882334
- Cited by
- 74
- References
- 23
- Citations by year
- 2026: 10 · 2025: 11 · 2024: 6 · 2023: 4 · 2022: 10 · 2021: 14 · 2020: 9 · 2019: 2 · 2018: 4 · 2017: 3 · 2016: 1
- FWCI
- 4.41
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Social Work in Health Care (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Health Resources and Services Administration (SUA3MC11054-06-00)
- Topics
- Health Sciences › Medicine › Emergency Medicine › Emergency and Acute Care Studies
- Health Sciences › Health Professions › General Health Professions › Patient Satisfaction in Healthcare
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Keywords
- autism spectrum disorder, emergency department care, children with autism, family perspectives, parental experiences, communication difficulties, sensory challenges, behavioral problems, child and family-centered care
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Canada, Child, Child, Preschool, Clinical Competence, Communication, Emergency Medical Services, Emergency Service, Hospital, Female, Humans, Interviews as Topic, Male, Middle Aged, Parents, Professional-Family Relations, Patient Satisfaction, Tertiary Care Centers
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