Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals

Abstract

Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.

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

“…Participants reported issues related to staff interaction, the environment and ED procedures, all of which appeared to be more or differently challenging for children with ASD than for peers. These findings concur with and build on previous findings that suggest difficulties in hospital-based care for children with ASD (Muskat et al, 2015;Muskat et al, 2016;Seid et al, 1997;Souders et al, 2002;Van Der Walt & Moran, 2001;Zwaigenbaum et al, 2016). To improve relational, environmental and procedural elements of ED care, participants in this study advocated principles of child and family-centered care such as respect, collaboration, information sharing, and partnership (Institute for Patient-and Family-Centered Care, 2010).…”

“…Children with ASD may have needs that require sensitivity and proactive responses to intrusive procedures and intensive environments (Muskat et al, 2015;Nicholas et al, 2016;Seid, Sherman, & Seid, 1997;Souders, DePaul, Freeman, & Levy, 2002;Van Der Walt & Moran, 2001;Zwaigenbaum et al, 2016). The hospital setting, and particularly the emergency department (ED), are environments with inherent acuity and intensity of communication.…”

“…Vaz (2010) describes the ED as a source of "sensory overload" (p. 753), and a recent study addressing hospital care among children with ASD identifies negative and even traumatizing experiences for children with ASD. Such negative experiences are seen to exacerbate health challenges and/or potentially impose mental health difficulties (Muskat et al, 2015).…”

A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System

“…Usual care may be ineffective for this population given the significant communication challenges (American, Psychiatric, and Association 1994); high rates of medical and psychiatric comorbidities (Croen et al 2015); unusual sensory responses to environmental stimuli, such as hypersensitivity to touch during examinations and increased anxiety associated with entering new stimulating environments (Muskat et al 2014), and lack of interest or awareness in social reputation (Izuma et al 2011).…”

Designing a program evaluation for a medical‐dental service for adults with autism and intellectual disabilities using the RE‐AIM framework

“…For instance, adults with developmental disabilities are more than twice as likely to be hospitalized for ambulatory care‐sensitive conditions such as diabetes‐related concerns that could have been avoided if managed adequately in primary care . These data suggest that the current system is not sufficiently managing clinical needs to avoid unnecessary emergency department visits …”