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Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists

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Abstract

The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists’ experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum.

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Notes

  1. Throughout the manuscript, we interchange the terminology “autistic patients” and “patient on the autism spectrum” (except in participant narratives) to acknowledge and respect the diversity of terminology perspectives (i.e., person-first vs. identity-first language) of this debate. For further reading on the critical discussion of language use, see Bottema-Beutel et al., (2021), Botha et al. (2021), Bury et al., (2020), Kapp et al., (2013), and Kenny et al., (2016), among others.

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Authors and Affiliations

  1. Department of Applied Disability Studies, Brock University, St. Catharines, Canada

    Priscilla Burnham Riosa & Amanpreet Randhawa

  2. Integrated Services for Autism and Neurodevelopmental Disorders, Toronto, Canada

    Barbara Muskat

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  1. Priscilla Burnham Riosa
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  2. Amanpreet Randhawa
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  3. Barbara Muskat
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Correspondence to Priscilla Burnham Riosa.

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Data collection and preliminary analyses were conducted in 2013 at the Hospital for Sick Children where the first and third authors were employed. Preliminary findings were presented at the International Society for Autism Research in 2014. This research was funded by a New Investigator Grant from the SickKids Foundation awarded to BM. We have no conflicts of interest to disclose.

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Burnham Riosa, P., Randhawa, A. & Muskat, B. Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists. J Autism Dev Disord 54, 312–325 (2024). https://doi.org/10.1007/s10803-022-05776-9

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