Meeting the cancer information needs of people with learning disabilities: experiences of paid carers

Abstract

Accessible summaryWhat we did:We made a picture book about cancer for people with learning disabilities.The book explains about cancer.It also explains about the treatments for cancer.We wanted to find out if the book is useful for people with learning disabilities.We met five people with learning disabilities who wanted to find out about cancer.Most of these people had a mum or dad who died of cancer.We watched them when they read the cancer book.We talked to them after they read the cancer book.We also met their supporter. They were professionals.What we found out:• The doctors didn't tell people with learning disabilities about cancer. The supporters had to do it. Sometimes the supporters decided not to tell the person with learning disabilities about cancer.• The supporters found it difficult to talk about cancer and dying. They didn't know enough about cancer themselves.What we want to say to everyone now:It is important that people with learning disabilities are told about cancer.But the supporters need to be helped too.Learning disability staff and cancer staff need to work together.Learning disability staff need training to be health facilitators.Together they can help people with learning disabilities to find out about cancer.SummaryThis paper reports on one of the findings of a small study that aimed to explore how people with learning disabilities accessed and were supported to use a pictorial cancer information book. Five people with learning disabilities who were affected by cancer and their paid carers participated in the study. Support staff in the study were the people who provided cancer information for people with learning disabilities. They struggled with this task, particularly when the person needed information about cancer that exceeded the staff's own knowledge and experience. Most were also inexperienced in dealing with the emotions around cancer. There was little evidence that the support staff received any support themselves, either from cancer professionals or from within their own organizations. The authors conclude that although the findings of this study are based on a small number of people, collaboration is required between health and learning disability services. Further more, in aid of collaboration, staff in learning disability services require education programmes to enhance their skills in facilitating the health needs of people with learning disabilities.