Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder

Abstract

Care for children with autism spectrum disorder (ASD) in the emergency department (ED) is increasingly recognized as difficult. Communication, sensory and behavioral challenges in a high intensity environment pose risks for negative experiences and outcomes. Through semi-structured interviews, parents (n = 31) and their children (n = 4) with ASD shared their perspectives on ED care. Participants identified issues that negatively affected care experiences, including care processes, communication issues, insufficient staff knowledge about ASD, and inadequate partnership with parents. Elements contributing to an improved ED experience were also cited, including staff knowledge about ASD, child- and family-centered care, and clarity of communication. Findings inform an emerging model of ED care. Recommendations for capacity building and practice development are offered.

Identifying the clinical needs and patterns of health service use of adolescent girls and women with autism spectrum disorder

“…Girls and women were also more likely to visit emergency departments than boys and men, a pattern that replicates research within ASD, the broader intellectual/developmental disability population, as well as adults without these disabilities [Liu, Pearl, Kong, Leslie, & Murray, ; Lunsky, Klein‐Geltink, & Yates, ]. Emergency department visits can be extremely stressful for individuals with ASD and their families [Nicholas et al, ]. Future research is required to examine factors associated with the increased proportion of females with ASD using emergency department services, with specific attention as to whether these visits are related to gaps in other community‐based services.…”

A qualitative study exploring parents’ experiences with epinephrine use for their child’s anaphylactic reaction

“…The ways in which hospital staff interacts with caregivers impacts their experience and affects their future actions. Parents have stated that kindness, and clear communication of health care providers can positively impact an Emergency Department visit [ 21 ]. One family explained that they were yelled at for not using an EAI and this made them feel guilty and ashamed.…”

Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum

“…A growing body of research has identified a complex array of access barriers for autistic people. In a previous taxonomy ( Walsh, Lydon, O’Dowd, & O’Connor, 2020 ), barriers to physical healthcare which were reported/endorsed by autistic individuals, caregivers and HCPs, were categorised as occurring at the level of the patient (e.g., difficulties with social interactions and communication; Zwaigenbaum et al, 2016 ), the HCP (e.g., a lack of physician knowledge about autism; Nicholas et al, 2016 ), and the healthcare system (e.g., a lack of support for autistic individuals and their families; Unigwe et al, 2017 ). Other literature has observed similar results ( Bradshaw, Pellicano, van Driel, & Urbanowicz, 2019 ; Mason et al, 2019 ).…”