ERIC Number: EJ1428749
Record Type: Journal
Publication Date: 2024-Jul
Pages: 12
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: EISSN-1461-7005
Barriers to Healthcare and a 'Triple Empathy Problem' May Lead to Adverse Outcomes for Autistic Adults: A Qualitative Study
Sebastian C. K. Shaw; Laura Carravallah; Mona Johnson; Jane O'Sullivan; Nicholas Chown; Stuart Neilson; Mary Doherty
Autism: The International Journal of Research and Practice, v28 n7 p1746-1757 2024
Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt -- in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem.
Descriptors: Barriers, Health Services, Autism Spectrum Disorders, Adults, Empathy, Primary Health Care, Models, Communication Problems, Physician Patient Relationship, Psychological Patterns, Helplessness, Foreign Countries
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://bibliotheek.ehb.be:2993
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United Kingdom
Grant or Contract Numbers: N/A