| Title: |
Barriers to Healthcare and a 'Triple Empathy Problem' May Lead to Adverse Outcomes for Autistic Adults: A Qualitative Study |
| Language: |
English |
| Authors: |
Sebastian C. K. Shaw (ORCID 0000-0001-9597-7436); Laura Carravallah; Mona Johnson; Jane O'Sullivan; Nicholas Chown; Stuart Neilson; Mary Doherty (ORCID 0000-0002-6995-3745) |
| Source: |
Autism: The International Journal of Research and Practice. 2024 28(7):1746-1757. |
| Availability: |
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://sagepub.com |
| Peer Reviewed: |
Y |
| Page Count: |
12 |
| Publication Date: |
2024 |
| Document Type: |
Journal Articles; Reports - Research |
| Descriptors: |
Barriers; Health Services; Autism Spectrum Disorders; Adults; Empathy; Primary Health Care; Models; Communication Problems; Physician Patient Relationship; Psychological Patterns; Helplessness; Foreign Countries |
| Geographic Terms: |
United Kingdom |
| DOI: |
10.1177/13623613231205629 |
| ISSN: |
1362-3613; 1461-7005 |
| Abstract: |
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. |
| Abstractor: |
As Provided |
| Entry Date: |
2024 |
| Accession Number: |
EJ1428749 |
| Database: |
ERIC |