Barriers to Healthcare for Persons with Autism: A Systematic Review of the Literature and Development of A Taxonomy

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

“…A systematic literature review on barriers to healthcare was conducted and is described in detail elsewhere ( Walsh et al, 2020 ). Individual barriers reported by autistic adults, caregivers and HCPs in the included studies were categorised into a taxonomy of barriers containing 4 themes (autism-related characteristics; other patient-related barriers; HCP-level barriers; system-level barriers).These themes informed the item construction of the tool.…”

“…This involved two consensus building meetings between three members of the research team (CW, SL, & POC). The specific items from existing questionnaires were deliberately not reviewed as part of this process as the team wanted to work from the themes within the previous taxonomy ( Walsh et al, 2020 ). It is acknowledged, however, that because there are a finite number of ways to ask about a particular barrier, similarities with items in existing measures may arise through convergence as part of the development process.…”

“…The same method was used for each of the five regressions with just the criterion variable changing each time. These variables were selected on the basis of a systematic review examining barriers to healthcare ( Walsh et al, 2020 ).…”

“…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 ).…”

“…It is therefore important that measurement tools designed to assess barriers to accessing healthcare consider barriers across the healthcare system. A recent systematic review ( Walsh et al, 2020 ) indicated that few caregiver-report tools consider the barriers across the healthcare system (i.e., patient, HCP, and systems levels). Although Raymaker et al (2016) have developed a thorough self-report tool for autistic adults, not all autistic individuals can self-report on their experiences due to factors such as age or comorbid intellectual disabilities.…”