Read the Report
The Final Report for this study is now available. Please download it by clicking on the link below.
A Plain English Short Report is also available. Please download it by clicking on the link below.
What research should be done on people with learning
disabilities experiences of cancer
Report from a seminar developing issues raised in the COPA funded advisory work
Report from a seminar developing issues raised in the COPA funded advisory work
About our work
CCRC collaborated with the Centre for the Older Person's Agenda to develop advisory forums of older people with learning disabilities who have been affected by cancer.
The aim was to learn from people affected by cancer who have a learning disability, and find out what areas they think are important to research.
What did we do?
We spoke to 4 people who have a learning disability who have been affected by cancer, to hear about their experiences and what research they think should be conducted. Three people spoke from the perspective of having a family member with cancer. One person spoke about her own experience for breast cancer.
Participants spoke about a wide range of experiences related to cancer and cancer care, including their knowledge and awareness of cancer, the wider impact of cancer, communicating with health professionals, healthy living and screenings and the support they received from family/friends/support workers.
Key areas for research identified in the talk of these participants included: (I) communication between health care professionals and people with learning disabilities when someone develops cancer; (ii) the effectiveness of supportive measures for families when someone gets cancer; (iii) appropriate support mechanisms for people with learning disabilities, their families and staff when someone is very ill or dies from cancer; (iv) incidence and prevalence profiles for people affected by learning disabilities.
The research team faced a number of challenges when recruiting people to the project, as on a number of occasions it was found that people with learning disabilities were not told their diagnosis or the diagnosis of their family member or friends. This has important implications for service design and development as well as practice issues for health care staff and people supporting those with learning disabilities in the community.
What happens next?
The research ideas will be worked-up in to proposals, which aim to improve the knowledge base of how cancer is experienced by people with learning disabilities and ways of driving forward service design and delivery.
Who worked on this project?
Liz Forbat is the principal investigator; Lisa McCann is working on the project.
Schedule
May 1st 2007- 31st September 2007. Final Report is now available and an accessible summary for people with learning disabilities is also available.
Funding Organisation
The Centre for the Older Person's Agenda, Queen Margaret University