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Parent-reported factors associated with the emergency department presentation of children and adolescents with autism spectrum disorder and/or intellectual disability with behaviours of concern: a qualitative study
  1. Jasmine Pillai1,
  2. Karen Dunn2,
  3. Daryl Efron1,3,4
  1. 1Department of General Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia
  2. 2Department of Emergency Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia
  3. 3Centre for Community Child Health, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
  4. 4Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia
  1. Correspondence to Dr Jasmine Pillai, Department of General Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia; jasmine.pillai{at}rch.org.au

Abstract

Objective We aimed to examine the parent-reported factors contributing to the emergency department (ED) presentation of children and adolescents with autism spectrum disorder (autism) and/or intellectual disability (ID) with behaviours of concern (BOC).

Design Qualitative study using semistructured interviews. Data were analysed phenomenologically using inductive thematic analysis.

Setting The ED of the Royal Children’s Hospital, Melbourne, Australia, a tertiary paediatric hospital.

Participants 14 parents and/or carers of children and adolescents with autism and/or ID who presented to ED for management of BOC.

Results Three themes emerged from the data: (1) Parents and carers had difficulties navigating the healthcare system and accessing appropriate community supports prior to their child’s ED presentation; (2) Families presented to ED due to an inability to manage risk and/or contain their child’s behaviour, compounded by carer burn-out; (3) Presentation to ED was considered a last resort option for many families. The ED was generally unable to assist families in the ongoing management of their child’s BOC, leading to a potential need to re-present in future.

Conclusions This study highlights the need for families of children with autism and ID and associated BOC to have improved access to appropriately skilled community health professionals, allowing their BOC to be addressed as they emerge rather than at crisis point. The findings additionally highlight the need for changes to the delivery of acute care in the management of BOC, to minimise patient distress and maximise safe and satisfactory patient outcomes.

  • autism
  • child health services
  • emergency service, hospital
  • paediatrics
  • mental health

Data availability statement

Data are available upon reasonable request. Interview transcripts are available upon reasonable request.

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Data availability statement

Data are available upon reasonable request. Interview transcripts are available upon reasonable request.

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Footnotes

  • Contributors JP: guarantor, study planning and design, data collection, data analysis and interpretation (including thematic reflexive discussion), manuscript draft and final approval; KD: study planning and design, review of key data, thematic reflexive discussion, critical revision of the manuscript for important intellectual content, final approval of the manuscript version submitted for publication; DE: study idea, study planning and design, thematic reflexive discussion, critical revision of the manuscript for important intellectual content, final approval of the manuscript version submitted for publication.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.