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

Abstract

ObjectiveWe 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).DesignQualitative study using semistructured interviews. Data were analysed phenomenologically using inductive thematic analysis.SettingThe ED of the Royal Children’s Hospital, Melbourne, Australia, a tertiary paediatric hospital.Participants14 parents and/or carers of children and adolescents with autism and/or ID who presented to ED for management of BOC.ResultsThree 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.ConclusionsThis 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.

Seeking Care for Children with Intellectual and/or Developmental Disabilities in the Emergency Department: A Mixed Methods Systematic Review of Parents’ Experiences and Information Needs

“…Often long wait times at the ED were viewed as a significant source of stress for parents leading to negative experiences. This finding emerged from qualitative data reported in four articles 7,32,34 and was further enriched by the qualitized data from Garrick 2022. 31 Some parents worried about the negative impact long wait times would have on their child and believed this would affect their decision and their child's acceptability to visit the ED in future.…”

“…of studies were from Canada, 14,29,30 two (29%) were from Australia, 31,32 and one (14%) from the USA. 33 Most were conducted in pediatric specific EDs (n = 5, 71%).…”

“…The mean year of publication was 2019, with the majority (71%) of studies published after 2016. Three studies were classified as quantitative design (n = 3, using cross-sectional surveys 30,31,33 ), three studies were classified as qualitative design (descriptive phenomenology, 32 grounded theory, 14 interpretive description 34 ) and one as a mixed-method design, 29 utilizing interviews, journey mapping and surveys. Cumulatively, there were 523 participants in the included studies (note overlap in participants from three studies 7,14,15 ), ranging from 14 to 421 across studies.…”

“…Parents also worried about the impact of lengthy wait times and unnecessary restraint strategies used to manage their child. This theme was further categorized into the following subthemes: This finding was illustrated by the qualitative data from three articles 7,30,32 and the qualitized data from one. 31 Parents in these studies reported feeling that the ED staff were mainly trained in the medical management of an emergency situation and their role did not help parents with the management of their child's behaviors of concern (BOC), such as selfinjurious behaviors, verbal or physical aggression, etc., which forced them to seek help at the ED.…”

“…Parents Worried About Using a Special Resource Like ED for Behaviors of Concern This finding was mainly revealed through the qualitative data reported in Pillai 2022. 32 Parents reported feeling "awful" in using a valuable resource like an ED to get help for their child's BOC, especially when the service was needed for other critical medical emergencies (eg, during the COVID pandemic). Some parents reported feeling uncomfortable taking up a hospital bed after their child was managed and stabilized at the ED.…”