What tools, resources and interventions are available to support people with learning disabilities who are living with long-term, progressive health conditions, discuss their support needs: A two-stage scoping exercise

Why is the research needed?

People with learning disabilities often have long-term, progressive illnesses such as heart disease or diabetes. However they are also more likely to have their concerns overlooked and unmet support needs. It is therefore recommended that healthcare workers ask these patients where they need more support and discuss with them what might help. This is known as “person-centred care.”

To help people with learning disabilities take part in these ‘person-centred’ conversations the use of tools (such as questionnaires) has been suggested. However it’s not clear what tools are available or how well they work. People with learning disabilities have also told us that the use of tools is varied and doesn’t always happen.

What are we doing?

We plan to find out more about what tools (or other approaches) are available and how they support the above conversations in practice.

In order to do this we are searching the academic literature and relevant reports to identify existing tools/resources and their use in practice. We plan to follow this up with an online questionnaire to healthcare professionals, support workers and family carers asking them what tools or resources they use and how useful they find them.

How are we working with communities, services and organisations?

We have worked with Northamptonshire People First to discuss their experiences in this area and their ideas about how to better support the involvement of people with learning disabilities (and long term, progressive conditions) in discussions about their support needs. We will continue to engage with the learning disability community to consider the results of this study and how they can be used to support person-centred care in practice.

What will the impact and benefits of this research be?

This exploratory study will provide an evidence-based overview of how people with learning disabilities (and long-term, progressive conditions) are involved in discussions about their support needs. We will use this to inform current research priorities for a future grant application.

What do we have planned for knowledge mobilisation and implementation?

We will produce a lay summary and blog post highlighting our results for both service users and professionals.

Related papers, outputs and resources

Research paper will be added once available