People with learning disabilities’ and carers’ research questions for investigating health risks

2006 Conference

Most people with learning disabilities, family carers, and care-workers do not get the chance to decide about research projects. Anita Young asked 20 people with learning disabilities and 20 carers / care-workers about the big questions for doing a research project. The project was about making things better for health.

Anita will talk about how she spoke to the 40 people using stories and pictures. Two stories told different kinds of harm about heart disease. Everyone was asked to give a question for each story. Seventy-eight questions were given, and from these came six big ideas to study.

Anita talked about the six big ideas with other groups of people with learning disabilities, carers and care-workers. All groups agreed that the six big ideas were the right ones.

Then the 40 people chose their top big idea.

The study showed that people with learning disabilities and carers can make up questions to study what theyfeel is important. Also they can decide what to study first.

You will have the chance to discuss how professionals may feel about research questions made up people with learning disabilities.