Evaluating the Impact of Emergency Room Services for Children and Adolescents with Autism Spectrum Disorder
Children with Autism Spectrum Disorder (ASD) are in frequent contact with health and mental health services, yet experience difficulties in accessing appropriate care. This study complements an ongoing study examining hospital-based inpatient care for children and adolescents with ASD, focusing specifically on experiences related to care delivery in the emergency department (ED). Negative experiences in the ED have the potential to create or exacerbate deleterious health and mental health consequences for children with ASD, and can create challenges for health care providers (HCPs). Review of these domains will provide a critical lens through which to examine the practices, policies, experiences, and processes that impact children and youth with ASD in the ED The study will identify key issues related to patterns, experiences and processes of ER care for children and youth with ASD, while generating recommendations for practice and policy.
This multisite study looks to (1) identify experiences related to accessibility and navigation of the ED, (2) examine how health care providers experience interactions with children with ASD and their families, and (3) identify gaps and opportunities for improvement in ED services. The ultimate goal is to identify potential strategies to improve ED protocols and care for children and adolescents with ASD.
Semi-structured qualitative interviews were conducted at the Stollery Children’s Hospital in Edmonton, Alberta, and the Hospital for Sick Children in Toronto, Ontario. To date an n=20 families, and n=14 HCPs have participated in the study across both sites. Using a purposeful sampling approach, the study is recruiting across levels of ED care, and includes: (a) young persons with ASD (to age 18 years) who have recently sought emergency health care at either ER sites; (b) their parent(s); (c) inter-professional ER care providers, (d) community clinicians in Edmonton and Toronto serving children and youth with ASD utilizing ERs, (e) administrators and policy-makers in Edmonton and Toronto who set directions, establish services, and facilitate evaluation of ER services. Continued data collection efforts across sites will ensure sample diversity.
Emerging themes common to participants and HCPs include: (1) challenges associated with ED waiting times and HCP transparency in care delivery; (2) disclosure of a child’s ASD to HCPs and ED staff; (3) the importance of HCPs abilities to effectively and appropriately engage with, and establish baseline in, children and youth with ASD; (4) HCP utilizing parent/caregiver as expert on the child with ASD (e.g., baseline presentation, known behaviours, sensitivities); (5) HCPs utilizing parent/caregiver to maintain stability during treatment (6) continued education for HCPs to ensure best practice standards are met when working with children and youth with ASD (e.g., documentation, video, toolkits).
This study depicts the ED experiences of children and youth with ASD, their families, and their HCPs. It offers guidance to ED health care providers by proposing practice guidelines and policy recommendations. Proposed practice implications of this research include the creation of toolkits for parents and HCPs, and the development of a more ASD-friendly ED environment for families.