Cancer screening can save lives if people participate. People with learning disabilities participate in screening less often than other people. This project aimed to identify the barriers and facilitators people with learning disabilities face to accessing cancer screening and develop interventions to improve cancer screening access for people with learning disabilities in collaboration with people with learning disabilities, carers, and people in relevant professional roles.
This project had four stages: 1) a systematic review of interventions to improve screening access for people with learning disabilities; 2) semi-structured interviews on screening experiences; 3) participatory workshops to develop recommendations to improve screening access; and 4) focus groups on the acceptability of interventions to increase bowel screening uptake. Stage 4 focused on bowel screening because people with learning disabilities are at an increased risk of bowel cancer.
Stage 1: The systematic review included 32 reports that covered 30 different interventions. Their effectiveness was mixed, but multi-strategy interventions targeting access barriers across individual, provider, and organisational levels were more effective.
Stage 2: Twenty-nine people with learning disabilities, nine carers/supporters, and 55 people in relevant professional roles took part in semi-structured interviews. Barriers and facilitators to screening were identified within six themes: automatic motivation (e.g. fear), reflective motivation (e.g. weighing up potential harms), psychological capability (e.g. accessible information), physical capability (e.g. reliable transportation), social opportunity (e.g. support), and physical opportunity (e.g. accessible equipment).
We combined Stage 1 and Stage 2 findings to develop recommendations to increase cancer screening uptake.
Stage 3: Seven people with learning disabilities, six carers/supporters, and 12 professionals attended the workshops. We presented the recommendations to improve cancer screening uptake at the workshops and asked participants to provide feedback. Through discussion, four key areas were identified for intervention development: 1) accessible invitation and results letters, 2) educational resources for healthcare providers, 3) systems to identify people with learning disabilities, and 4) patient navigation.
Stage 4: We held two focus groups of three participants with learning disabilities and one focus group of eight people in relevant professional roles to refine the interventions from Stage 3 to improve bowel screening access among people with learning disabilities.
Our findings highlight unique cancer screening barriers experienced by people with learning disabilities, and potential interventions. Our findings add to the growing evidence informing the development of interventions targeting cancer screening access and uptake among people with learning disabilities.
Outputs
We created two outputs in collaboration with people with learning disabilities to help share the findings from this research project in an easier-to-understand format. You can watch a short animation about the findings, produced by Media Co-Op, at the link below. You can also download a copy of the A4 infographic that we produced, via the link below.
Project information last updated February 2026.
Lauren is a Research Associate and has been working at the University of Glasgow since 2015. She is currently working on projects aiming to increase the uptake of cancer screening among people with learning disabilities. She recently completed a PhD in the School of Health and Wellbeing at the University of Glasgow. Her thesis used qualitative methods to explore how asset-based approaches, social inclusion, and belonging were experienced by people with learning disabilities both during and prior to the Covid-19 pandemic.
Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.
