C11
The experiences of people with learning disabilities who have cancer: an ethnographic study
Irene Tuffrey-Wijne, Sheila Hollins
St George's, University of London, London, UK
Aims
To provide insight into the experiences and needs of people with learning disabilities who have cancer.
Design
Prospective qualitative study of people with learning disabilities who have cancer, using ethnographic methods.
Participants
Thirteen people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. Ten were terminally ill; seven died during the data collection period.
Setting
Participants’ homes, hospitals, nursing homes and hospices in London and surrounding areas.
Results
The participants depended on others to negotiate contact with the outside world, including the health care system. This could lead to delayed cancer diagnosis and discrimination around treatment options. Most participants were not helped to understand their illness and its implications. Despite good intentions, paid learning disability carers were too inexperienced to provide good standards of cancer and end-of-life care. Hospital and hospice staff lacked knowledge around learning disabilities, and mostly failed to provide the participants and their carers with adequate support. However, participants demonstrated resilience, and found ways to hold on to the aspects of life that mattered to them.
Conclusion
Learning disability services in the UK are currently poorly adapted to meet the needs of clients who have cancer and/or who are terminally ill. Intensive support is needed from generic health care services, including specialist cancer and palliative care services; but there are significant gaps in knowledge and training, leading to disengaged services that are unaware of the physical, emotional and practical needs of people with learning disabilities and their carers.
