‘I’m fighting my case all the time’. Candidacy, stigma, and negotiated access in cancer care: experiences of adults with intellectual disability and their supporters

Abstract Background People with intellectual disability experience substantial inequities in cancer outcomes, including later-stage diagnosis and higher mortality. While disparities in awareness and screening are well documented, less is known about how inequities arise across the cancer care pathway following symptom presentation. Understanding how access to diagnosis and treatment is negotiated is critical to addressing avoidable delays and improving outcomes. This study explores lived experiences of cancer pathways among adults with intellectual disability and their supporters, to examine how inequalities are produced and sustained within healthcare systems. Methods A qualitative study using semi-structured interviews was conducted with adults with intellectual disability ( n = 5) and supporters, including family members and professionals ( n = 5), across England and Ireland. Data were collected between August 2024 and September 2025 using accessible, flexible approaches. Analysis followed reflexive thematic analysis, combining inductive coding with abductive, theory-informed interpretation. Findings were interpreted using Candidacy and the Health Stigma and Discrimination Frameworks (HSDF) to examine how legitimacy for care is recognised, negotiated, or denied. Results Three overarching themes were generated: (1) understanding lives, context and identity; (2) navigating the healthcare system; and (3) envisioning compassionate and inclusive futures, alongside cross-cutting themes of stigma and advocacy. Participants described cancer pathways as contingent and effortful, requiring repeated negotiation of legitimacy. Intellectual disability-related stigma operated upstream of access, shaping recognition of need, credibility, and the speed of clinical response. Fragmented and inflexible systems produced delays, often resulting in crisis-based adjudication of care. Advocacy emerged as essential to sustaining access, but also revealed systemic failure, with progression through care frequently dependent on supporters’ capacity to negotiate recognition. We conceptualise this as ‘advocated-candidacy’, where access is contingent on relational labour, rather than system design. Conclusions Inequities in cancer care for people with intellectual disability are structurally produced through stigma and conditional access to care. Integrating Candidacy with HSDF provides a novel theoretical account of how legitimacy is unevenly distributed across the cancer pathway. Reducing inequities requires system-level redesign to embed accessibility, continuity, and reasonable adjustments, shifting access from negotiated and advocacy-dependent, to routine and equitable care.