Older people with learning disabilities affected by cancer: Involvement and engagement work to inform a research agenda: Final Report

Abstract

Summary: The Cancer Care Research Centre (CCRC) works with people affected by cancer to find out about their experiences of cancer and what they think about the treatment and care they have had. The CCRC has 16 Advisory Groups of people affected by cancer across Scotland. These groups help the Centre develop research plans by discussing their experiences and views of cancer services. This project worked with adults with learning disabilities affected by cancer. Four people with learning disabilities met with the researchers to talk about their experiences of cancer. Three people had a family member with cancer. One person had breast cancer and talked about her care. By speaking to the researchers, these people advised the researchers on the important issues to research for people with learning disabilities affected by cancer. The project found that new research should focus on: communication in hospitals between professionals and people with learning disabilities; how families cope when someone gets cancer; how to support people with learning disabilities, their families and staff when someone is very ill or dies from cancer; how many people with learning disabilities develop cancer.