Understanding the cancer diagnosis pathway: Experiences of adults with intellectual disability and those that support them. A qualitative study.
Abstract
People with intellectual disability experience well-documented inequalities in cancer outcomes, including later-stage diagnosis and higher rates of emergency presentation. However, far less is known about how these inequalities are experienced and produced within the cancer care pathway itself, particularly beyond cancer awareness and screening. This qualitative interview study explores lived experiences of seeking help for symptoms, undergoing diagnostic investigations, receiving a cancer diagnosis, and navigating treatment and follow-up care. Semi-structured interviews were conducted with adults with intellectual disability and with advocates/supporters who had experience of supporting someone with intellectual disability through cancer care. Analysis was undertaken using reflexive thematic analysis and interpreted through the Candidacy Framework and the Health Stigma and Discrimination Framework, to examine how access to care is negotiated and how stigma shapes recognition, credibility, and service permeability across the pathway. The study highlights how inequity is produced through everyday interactions, system design, and the labour required to secure care, with advocacy operating both as a compensatory mechanism and as a catalyst for wider cultural and structural change. Findings aim to inform more inclusive approaches to cancer care design, policy, and practice, and to strengthen the limited qualitative evidence base on cancer experiences among people with intellectual disability.
Fields of Study & Subjects
Down syndrome and intellectual disability research
Inclusion and Disability in Education and Sport
Disability Rights and Representation
Publication details
- Journal / source
- OSF Preprints (OSF Preprints)
- Publication date
- 9 February 2026
- Language
- EN
- Document type
- Preprint