QualitativeAutism : the international journal of research and practice2022

A balancing act: An interpretive description of healthcare providers' and families' perspective on the surgical experiences of children with autism spectrum disorder.

Stephanie L Snow, Isabel M Smith, Margot Latimer and 3 others

PMID 34320870

WHAT IT FOUND

Parents and providers described surgery for children with autism as a precarious balancing act.

They valued individualized care, parent-provider collaboration, empathy, and autism-friendly environments, but providers still felt uncomfortable despite knowing strategies.

Key findings

01Participants described supporting a child with autism through surgery as a delicate balancing act, where a single misstep could lead to child distress.

02Participants identified individualized day-of-surgery strategies, including preparation, active distraction, parental presence, sedation, and reducing sensory stimuli, non-essential interactions, and wait times, while noting not every strategy helps every child.

03Healthcare providers generally reported enough knowledge and skills to care for children with autism, yet many still felt uncomfortable or reluctant to take ownership of that knowledge.

STILL TO COME

How it was doneWhat they found

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What it does not show

The study interviewed 8 parents and 15 healthcare providers at one Canadian tertiary pediatric hospital, so it cannot show what most families or providers elsewhere experience. It describes perspectives and experiences, not whether any strategy changed distress, safety, or surgical outcomes. Children with autism were not interviewed directly, so their own views are missing. All parent participants were mothers, and the children's most recent surgeries were reported mainly as dental, orthopedic, urological, or otorhinolaryngological. The authors could not accurately count how many potential healthcare providers were approached. The authors stated they cannot conclude these experiences represent people not interviewed or other settings.

Declared interests

The authors declared no potential conflicts of interest. Funding was provided by a Translating Research into Care grant from the IWK Health Centre. One author was supported by a Canadian Institutes of Health Research Vanier Canada Scholarship and the Autism Research Training Program.

The easy way to misread this

Do not read these themes as evidence that individualized care, collaboration, or autism-friendly environments improve surgical outcomes. This study reported participants' perspectives and did not test whether any strategy reduced distress or changed care.

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The study

Participants
23 participants (8 parents, 15 healthcare providers)
Certainty of evidence
Very low

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    Stephanie L Snow, Isabel M Smith, Margot Latimer, et al. A balancing act: An interpretive description of healthcare providers' and families' perspective on the surgical experiences of children with autism spectrum disorder. Autism : the international journal of research and practice. 2022.

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