Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities
Open accessAbstract
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.
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Families without access to care in their community are less likely to seek care due to additional cost, time commitment, and disruption to daily obligations associated with long-distance travel.
“Families that do not have access to care in their community are less likely to seek care due to the additional cost, time commitment and disruption to daily obligations (e.g., work) associated with longdistance travel.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [15]
In Methods > Instrument development (page unavailable), the paper identifies transportation cost and distance to a doctor’s office as potential barriers to healthcare for adults. It does not establish that families without local care are less likely to seek care, or attribute that to travel time and disruption of work or other daily obligations. (LLM, conf=0.84)
Experimental — accuracy not yet measuredFear and embarrassment is a barrier to accessing health care for individuals with intellectual disabilities and/or autism.
“Fear and embarrassment is a barrier to accessing health care for individuals with intellectual disabilities and/or autism.57–59”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [59]
Fears include fears of being judged over lifestyle choices, of blood tests and vaccinations, of medical instruments, and fears associated with a lack of understanding about screening procedures.
“These include fears of being judged over lifestyle choices, of blood tests and vaccinations,38 of medical instruments,31 and fears associated with a lack of understanding about screening procedures.59”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [59]
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References 27 · Cited by 219
- Authors
- Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C.
- Affiliations
- Portland State University (US)
- Syracuse University (US)
- Academic Autism Spectrum Partnership in Research and Education, USA
- Oregon Health & Science University (US)
- University of San Francisco (US)
- Corresponding author
- Raymaker, Dora M
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2016-09-22
- Volume
- 21
- Issue
- 8
- Pages
- 972-984
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- PMC
- PMC5362353
- OpenAlex
- W2521686427
- Cited by
- 219
- References
- 27
- Citations by year
- 2026: 30 · 2025: 20 · 2024: 25 · 2023: 24 · 2022: 34 · 2021: 38 · 2020: 20 · 2019: 18 · 2018: 5 · 2017: 4 · 2016: 1
- FWCI
- 5.94
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- PDXScholar (Portland State University) (submittedVersion)
- Funders
- Oregon Clinical and Translational Research Institute (RR024140)
- National Institute of Mental Health (R34MH092503)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- barriers to care, autistic adults, adults with disabilities, instrument development, patient-provider communication, emotion regulation, sensory sensitivity, health system navigation, content validity, construct validity, responsiveness to change
- MeSH terms
- Adult, Autistic Disorder, Female, Persons with Disabilities, Health Services Accessibility, Humans, Male, Middle Aged, Health Care Surveys, Community-Based Participatory Research
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