An interpretive description of the experiences of autistic children and their caregivers with rural emergency department care

Background: Prevalence of Autism in Canada is increasing, with a current rate of diagnoses at one in 44. Autistic individuals experience medical comorbidities at a higher rate than the general population, resulting in increased healthcare access. There is a lack of research focusing on the barriers and facilitators autistic children and caregivers experience accessing healthcare in rural contexts, and even less so for accessing emergency department (ED) care. Purpose: The purpose of this research was to explore the accounts of autistic children and their caregivers accessing rural ED care. Focus was placed on garnering recommendations directly from participants to inform healthcare practice to support inclusive healthcare provision. Methods: This study was undertaken with a qualitative methodology utilizing Interpretive Description supplemented with an arts-based approach. Semi-structured dyadic interviews were undertaken with children aged 7-16 years old (n=12) and caregivers (n=13), with children drawing impactful pictures of their experiences. Data Analysis: Reflexive Thematic Analysis with a Critical Disability lens informed themes with pragmatic suggestions for improving care. Outcomes/Results: Five themes were developed: Relational dynamics; the built environment; socially constructed norms for care; attitudinal forces; and the intersection of autism ED care and rurality. Drawings by the child participants reinforced these themes. All themes had tangible recommendations for practice change as directly voiced by both autistic children and caregivers. Relevance/Significance: Healthcare provision is more successful when the necessary individualized supports are provided. This research contributes to a greater understanding of what autistic children and caregivers experience when accessing rural emergency services to guide the identification of what this support entails. By emphasizing the first-person account of these experiences, this research provides a platform for this vulnerable population to voice their desired outcomes and recommendations, facilitating participation in the improvement of the care they receive. These findings may inform the development and testing of interventions that incorporate innovative strategies for autistic-centred care.