Why is the research needed?
People with learning disabilities often do not receive the support they need to understand and care for their bodies. Important topics such as menstruation, relationships, sex, and pregnancy are frequently avoided or overlooked. Many individuals are excluded from decisions about having children or raising them. This lack of support reflects wider inequalities in health and social care, including unequal access to services and discrimination related to disability and gender. Opportunities for people with learning disabilities to talk openly about these issues are limited. This research aims to address these gaps and ensure their voices are heard.
What are we doing?
We aim to build a fair, inclusive and sustainable partnership between people with learning disabilities, academic researchers, and those working in policy and practice. Using creative and inclusive methods, we will identify key research priorities, explore lived experiences through engagement, conversation and observation, and co‑produce a research agenda that reflects what matters most to people with learning disabilities. Through a phased approach, we will learn from each other’s experiences to develop new ways of working together, gather insights by listening to and observing what happens in communities, and run workshops that bring together people with learning disabilities and those in policy and practice roles to turn the most important issues into a strong research proposal.
How are we working with communities, services and organisations?
We are working closely with community partners, policymakers, and health and social care professionals to ensure the research is relevant and impactful. We have established key partnerships with community organisations, including Ace Anglia and Inclusion North, which together support around 3,000 people with learning disabilities each year, as well as with regional healthcare and public health bodies and national organisations and charities. People with learning disabilities are involved throughout as active contributors and co‑researchers.
What will the impact and benefits of this research be?
This project will empower people with learning disabilities to shape research about their lives, highlight inequalities in reproductive health and care, develop new and inclusive methods for co‑producing research, inform future health and social care research and policy, strengthen partnerships between communities, researchers and services, and ultimately ensure that research better reflects the priorities and experiences of people with learning disabilities.
What do we have planned for knowledge mobilisation and implementation?
For knowledge mobilisation and implementation, we will share findings widely and in accessible formats to ensure they lead to real change. This will include producing outputs such as easy‑read summaries, videos and blog posts, sharing findings with local, regional and national stakeholders, hosting an online national dissemination event, and feeding the results into NIHR PGfAR and other research funding programmes.
Related papers, outputs and resources
We will produce outputs in multiple formats, such as easy-read summaries, videos, and blog posts.
Who is involved?
- Principal Investigator: Alex Kaley, University of East Anglia (UEA)
- Co-Investigator: Rachael Eastham, Lancaster
- Co-Investigator: Ewen Speed, University of Essex
- Community Co-Investigators, Inclusion North and Ace Anglia
Get in contact
Email Alex Kaley at a.kaley@uea.ac.uk.
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