Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities

Dora M. Raymaker, Katherine E. McDonald, Elesia Ashkenazy, Martha Gerrity, Amelia M. Baggs, Clarissa Kripke, Sarah Hourston, Christina Nicolaidis

Research output: Contribution to journalArticle

20 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)972-984
Number of pages13
JournalAutism
Volume21
Issue number8
DOIs
StatePublished - Nov 1 2017

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Delivery of Health Care
Community-Based Participatory Research
Research
Health Personnel
Fear
Anxiety
Communication
Costs and Cost Analysis

Keywords

  • accessiblity
  • adults
  • autism spectrum disorders
  • community-based participatory research
  • health services
  • instrument development

ASJC Scopus subject areas

  • Developmental and Educational Psychology

Cite this

Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., ... Nicolaidis, C. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972-984. https://doi.org/10.1177/1362361316661261

Barriers to healthcare : Instrument development and comparison between autistic adults and adults with and without other disabilities. / Raymaker, Dora M.; McDonald, Katherine E.; Ashkenazy, Elesia; Gerrity, Martha; Baggs, Amelia M.; Kripke, Clarissa; Hourston, Sarah; Nicolaidis, Christina.

In: Autism, Vol. 21, No. 8, 01.11.2017, p. 972-984.

Research output: Contribution to journalArticle

Raymaker, DM, McDonald, KE, Ashkenazy, E, Gerrity, M, Baggs, AM, Kripke, C, Hourston, S & Nicolaidis, C 2017, 'Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities', Autism, vol. 21, no. 8, pp. 972-984. https://doi.org/10.1177/1362361316661261
Raymaker, Dora M. ; McDonald, Katherine E. ; Ashkenazy, Elesia ; Gerrity, Martha ; Baggs, Amelia M. ; Kripke, Clarissa ; Hourston, Sarah ; Nicolaidis, Christina. / Barriers to healthcare : Instrument development and comparison between autistic adults and adults with and without other disabilities. In: Autism. 2017 ; Vol. 21, No. 8. pp. 972-984.
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