A trial of the AASPIRE healthcare toolkit with Australian adults on the autism spectrum
Lisa R. J. Kang A B , Tim Barlott![https://orcid.org/0000-0002-7868-783X](/media/client/orcid_16x16.png)
![https://orcid.org/0000-0001-7946-0883](/media/client/orcid_16x16.png)
![https://orcid.org/0000-0002-7909-4526](/media/client/orcid_16x16.png)
A School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Qld 4067, Australia.
B Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Qld 4068, Australia.
C Faculty of Rehabilitation Medicine, University of Alberta, Edmonton T6G 2R3, Canada.
D Queensland Centre for Intellectual and Developmental Disability, MRI-UQ, The University of Queensland, Brisbane, Qld 4101, Australia.
E Social and Global Studies Centre, School of Global, Urban and Social Studies, RMIT University, Melbourne, Vic. 3001, Australia.
Australian Journal of Primary Health 28(4) 350-356 https://doi.org/10.1071/PY21134
Submitted: 18 June 2021 Accepted: 18 February 2022 Published: 13 May 2022
© 2022 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution 4.0 International License (CC BY).
Abstract
Background: Autistic adults experience barriers to accessing health care, such as service provider communication not meeting their needs, healthcare facilities causing sensory discomfort and feeling fear or anxiety regarding their healthcare visit. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) developed and trialled an online healthcare toolkit to reduce such barriers and improve healthcare interactions between autistic adults and their primary care providers in the United States. This preliminary study aimed to explore experiences of autistic adults using the AASPIRE Healthcare Toolkit in Australia.
Methods: Semi-structured interviews were conducted with six autistic adults about their experiences and perceptions of utilising the toolkit in an Australian healthcare setting.
Results: Participants identified that the toolkit facilitated their interactions with health professionals by providing structure to appointments, supplementing new knowledge and increasing individual confidence. They also offered suggestions to tailor the toolkit for use in Australia.
Conclusions: Future research should seek to explore the experiences of autistic adults using a version of the toolkit adapted for Australian use, as well as exploring the views of health professionals utilising it.
Keywords: adult, autism spectrum disorder, autistic, health resource, health services, qualitative content analysis, qualitative description, qualitative research.
References
Baldwin S, Costley D (2016) The experiences and needs of female adults with high-functioning autism spectrum disorder. Autism 20, 483–495.| The experiences and needs of female adults with high-functioning autism spectrum disorder.Crossref | GoogleScholarGoogle Scholar | 26111537PubMed |
Cline RJ, Haynes KM (2001) Consumer health information seeking on the Internet: the state of the art. Health Education Research 16, 671–92.
| Consumer health information seeking on the Internet: the state of the art.Crossref | GoogleScholarGoogle Scholar | 11780707PubMed |
Croen LA, Zerbo O, Qian Y, Massolo ML, Rich S, Sidney S, Kripke C (2015) The health status of adults on the autism spectrum. Autism 19, 814–823.
| The health status of adults on the autism spectrum.Crossref | GoogleScholarGoogle Scholar | 25911091PubMed |
Dern S, Sappok T (2016) Barriers to healthcare for people on the autism spectrum. Advances in Autism 2, 2–11.
| Barriers to healthcare for people on the autism spectrum.Crossref | GoogleScholarGoogle Scholar |
DeWalt DA, Broucksou KA, Hawk V, Brach C, Hink A, Rudd R, Callahan L (2011) Developing and testing the health literacy universal precautions toolkit. Nursing Outlook 59, 85–94.
| Developing and testing the health literacy universal precautions toolkit.Crossref | GoogleScholarGoogle Scholar | 21402204PubMed |
Friedman MG, Bryen DN (2008) Web accessibility design recommendations for people with cognitive disabilities. Technology and Disability 19, 205–212.
| Web accessibility design recommendations for people with cognitive disabilities.Crossref | GoogleScholarGoogle Scholar |
Gerber AH, McCormick CEB, Levine TP, Morrow EM, Anders TF, Sheinkopf SJ (2017) Brief report: factors influencing healthcare satisfaction in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders 47, 1896–1903.
| Brief report: factors influencing healthcare satisfaction in adults with autism spectrum disorder.Crossref | GoogleScholarGoogle Scholar | 28271179PubMed |
Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S (2016) Premature mortality in autism spectrum disorder. The British Journal of Psychiatry 208, 232–238.
| Premature mortality in autism spectrum disorder.Crossref | GoogleScholarGoogle Scholar | 26541693PubMed |
Hwang YI, Srasuebkul P, Foley KR, Arnold S, Trollor JN (2019) Mortality and cause of death of Australians on the autism spectrum. Autism Research 12, 806–815.
| Mortality and cause of death of Australians on the autism spectrum.Crossref | GoogleScholarGoogle Scholar | 30802364PubMed |
Jones L, Goddard L, Hill EL, Henry LA, Crane L (2014) Experiences of receiving a diagnosis of autism spectrum disorder: a survey of adults in the United Kingdom. Journal of Autism and Developmental Disorders 44, 3033–3044.
| Experiences of receiving a diagnosis of autism spectrum disorder: a survey of adults in the United Kingdom.Crossref | GoogleScholarGoogle Scholar | 24915932PubMed |
Kelley JM, Kraft-Todd G, Schapira L, Kossowsky J, Riess H (2014) The influence of the patient-clinician relationship on healthcare outcomes: a systematic review and meta-analysis of randomized controlled trials. PLoS One 9, e94207
| The influence of the patient-clinician relationship on healthcare outcomes: a systematic review and meta-analysis of randomized controlled trials.Crossref | GoogleScholarGoogle Scholar | 24718585PubMed |
Mason D, Ingham B, Urbanowicz A, Michael C, Birtles H, Woodbury-Smith M, Brown T, James I, Scarlett C, Nicolaidis C, Parr JR (2019) A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders 49, 3387–3400.
| A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults.Crossref | GoogleScholarGoogle Scholar | 31124030PubMed |
Nicolaidis C, Raymaker D, McDonald K, Kapp S, Weiner M, Ashkenazy E, Gerrity M, Kripke C, Platt L, Baggs A (2016) The development and evaluation of an online healthcare toolkit for autistic adults and their primary care providers. Journal of General Internal Medicine 31, 1180–1189.
| The development and evaluation of an online healthcare toolkit for autistic adults and their primary care providers.Crossref | GoogleScholarGoogle Scholar | 27271730PubMed |
Nicolaidis C, Raymaker D, Kapp SK, Baggs A, Ashkenazy E, McDonald K, Weiner M, Maslak J, Hunter M, Joyce A (2019) The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism 23, 2007–2019.
| The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.Crossref | GoogleScholarGoogle Scholar | 30939892PubMed |
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 21, 972–984.
| Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.Crossref | GoogleScholarGoogle Scholar | 27663266PubMed |
Sandelowski M (2000) Whatever happened to qualitative description? Research in Nursing and Health 23, 334–340.
| Whatever happened to qualitative description?Crossref | GoogleScholarGoogle Scholar | 10940958PubMed |
Sandelowski M (2010) What’s in a name? Qualitative description revisited. Research in Nursing and Health 33, 77–84.
| What’s in a name? Qualitative description revisited.Crossref | GoogleScholarGoogle Scholar | 20014004PubMed |
Singh JS, Bunyak G (2019) Autism disparities: a systematic review and meta-ethnography of qualitative research. Qualitative Health Research 29, 796–808.
| Autism disparities: a systematic review and meta-ethnography of qualitative research.Crossref | GoogleScholarGoogle Scholar | 30474491PubMed |
Townsend EA, Polatajko HJ (2013) ‘Enabling occupation II: advancing an occupational therapy vision for health, well-being, & justice through occupation.’ (CAOT Publications ACE: Ottawa)
Urbanowicz A, Parkin T, van Dooren K, Girdler S, Ciccarelli M, Lennox N (2020) The experiences, views, and needs of health professionals who provide care to adults on the autism spectrum. Research and Practice in Intellectual and Developmental Disabilities 7, 179–192.
| The experiences, views, and needs of health professionals who provide care to adults on the autism spectrum.Crossref | GoogleScholarGoogle Scholar |
Vogan V, Lake JK, Tint A, Weiss JA, Lunsky Y (2017) Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: a longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal 10, 264–270.
| Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: a longitudinal study of service rates, barriers and satisfaction.Crossref | GoogleScholarGoogle Scholar | 27899267PubMed |
Vohra R, Madhavan S, Sambamoorthi U (2017) Comorbidity prevalence, healthcare utilization, and expenditures of Medicaid enrolled adults with autism spectrum disorders. Autism 21, 995–1009.
| Comorbidity prevalence, healthcare utilization, and expenditures of Medicaid enrolled adults with autism spectrum disorders.Crossref | GoogleScholarGoogle Scholar | 27875247PubMed |
Warfield ME, Crossman MK, Delahaye J, Der Weerd E, Kuhlthau KA (2015) Physician perspectives on providing primary medical care to adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders 45, 2209–2217.
| Physician perspectives on providing primary medical care to adults with autism spectrum disorders (ASD).Crossref | GoogleScholarGoogle Scholar | 25724445PubMed |
Williams DL, Minshew NJ, Goldstein G (2015) Further understanding of complex information processing in verbal adolescents and adults with autism spectrum disorders. Autism 19, 859–867.
| Further understanding of complex information processing in verbal adolescents and adults with autism spectrum disorders.Crossref | GoogleScholarGoogle Scholar | 26019307PubMed |
Zerbo O, Massolo ML, Qian Y, Croen LA (2015) A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. Journal of Autism and Developmental Disorders 45, 4002–4014.
| A study of physician knowledge and experience with autism in adults in a large integrated healthcare system.Crossref | GoogleScholarGoogle Scholar | 26334872PubMed |
Zerbo O, Qian Y, Ray T, Sidney S, Rich S, Massolo M, Croen LA (2019) Healthcare service utilization and cost among adults with autism spectrum disorders in a U.S. integrated healthcare system. Autism in Adulthood 1, 27–36.
| Healthcare service utilization and cost among adults with autism spectrum disorders in a U.S. integrated healthcare system.Crossref | GoogleScholarGoogle Scholar |
Zhang Y, Wildemuth BM (2005) Qualitative analysis of content by. Human Brain Mapping 30, 2197–2206.