How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians

Mason, David, Ingham, Barry, Birtles, Heather, Michael, Cos, Scarlett, Clare, James, Ian Andrew, Brown, Toni, Woodbury-Smith, Marc, Wilson, Colin, Finch, Tracy and Parr, Jeremy R. (2021) How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians. Autism, 25 (3). pp. 774-785. ISSN 1362-3613

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Official URL: https://doi.org/10.1177/1362361321993709

Abstract

Autism spectrum condition is associated with co-occurring physical health conditions and premature mortality. Autistic people experience multiple barriers to accessing healthcare. This study investigated autistic people’s experiences of healthcare and professionals’ experiences of providing healthcare to autistic people. Focus groups with 11 autistic people and one supporter, and 15 one-to-one interviews with healthcare professionals were completed. Nine themes emerged from the autistic participants’ data and eight themes emerged from the health professionals’ data. Three themes were identified by both groups: healthcare contacts (for improving the patient–provider relationship), making reasonable adjustments to healthcare (e.g. providing alternative places to wait for an appointment) and autism diagnosis. Autistic participants discussed the role of cognitive factors in the success of healthcare visits (such as rehearsing an anticipated conversation with the clinician the night before an appointment) and clinicians described system-level constraints that may affect healthcare delivery (such as time limits on appointments). This study identified inexpensive changes that health professionals and managers can make to improve healthcare access for autistic people.

Lay abstract
Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets.

Item Type: Article
Additional Information: Funding information: The authors are grateful to the Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust for acting as research sponsor, the National Autistic Society as partners in the project, external advisory group members, and steering committee members for the Newcastle University autism spectrum adulthood and ageing programme. The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The funding was awarded to B.I. and J.R.P. by the Inge Wakehurst Trust for a study relating to improving the physical healthcare for autistic people (qualitative and quantitative data collection, and subsequent design of an intervention that aimed to improve the health of older autistic people).
Uncontrolled Keywords: barriers to healthcare, health services, qualitative research
Subjects: B700 Nursing
L500 Social Work
Department: Faculties > Health and Life Sciences > Nursing, Midwifery and Health
Depositing User: Elena Carlaw
Date Deposited: 25 May 2021 16:10
Last Modified: 31 May 2021 14:37
URI: http://nrl.northumbria.ac.uk/id/eprint/46279

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