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Understanding inequity in cancer diagnosis and care for people with a learning disability: A transformative mixed methods approach.
Doctoral Thesis   Open access

Understanding inequity in cancer diagnosis and care for people with a learning disability: A transformative mixed methods approach.

Natalie Maria Gil
University of Surrey
Doctor of Philosophy (PhD), University of Surrey
29/05/2026
DOI:
https://doi.org/10.15126/thesis.902070

Abstract

Learning disability Cancer Care Inequity Inequalities Cancer Prevention Health Psychology Intellectual Disabilities

Background

People with a learning disability experience substantial inequities in cancer outcomes, including later stage at diagnosis and higher cancer-related mortality. Although these disparities are increasingly recognised, less is known about mechanisms through which inequities emerge across the cancer care pathway, particularly in relation to symptom recognition, help-seeking, and diagnostic processes.

Aim

To examine how inequities in cancer diagnosis and care arise for people with a learning disability across the cancer care pathway and identify opportunities for transformation in research, policy, and practice.

Methods

This thesis employed a transformative mixed-methods approach. Study 1 was a scoping review synthesising evidence on cancer risk-factor and symptom awareness among people with a learning disability, carers, and healthcare practitioners. Study 2 involved semi-structured interviews with adults with a learning disability and supporters, exploring experiences of navigating cancer diagnostic pathways. Data were analysed using reflexive thematic analysis informed by Candidacy and Health Stigma and Discrimination Frameworks. Study 3, a population-based cohort study used linked primary care and national cancer registry data to examine variation in routes to diagnosis for breast, colorectal, lung, and prostate cancers among people with a learning disability.

Results

Cancer awareness among people with a learning disability and their supporters was limited. Qualitative findings demonstrated how recognition as a legitimate candidate for investigation and care was shaped by stigma, communication and organisational constraints, with advocates playing a critical role in navigating healthcare systems. Quantitative analyses identified inequities in diagnostic pathways, including higher likelihood of emergency presentation, lower likelihood of screening detection for people with a learning disability.

Conclusion

Inequities in cancer diagnosis arise through interacting structural, relational, and institutional processes across the cancer pathway. Addressing these inequities requires structural change, including more accessible services, improved communication practices, and greater visibility of learning disability within cancer policy, research, and health data systems.

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