People with learning disabilities who have cancer: an ethnographic study

BACKGROUND: Cancer incidence among people with learning disabilities is rising. There have been no published studies of the needs and experiences of people with learning disabilities and cancer, from their own perspective. AIM: To provide insight into the experiences and needs of people with learning disabilities who have cancer. DESIGN OF STUDY: Prospective qualitative study, using ethnographic methods. SETTING: Participants' homes, hospitals, nursing homes, and hospices in London and surrounding areas. METHOD: The participants were 13 people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. The main method of data collection was participant observation (over 250 hours). The median length of participation was 7 months. RESULTS: Participants' cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system. This could lead to delayed cancer diagnosis and a lack of treatment options being offered. Most participants were not helped to understand their illness and its implications. Doctors did not make an assessment of capacity, but relied on carers' opinions. CONCLUSION: Urgent action is warranted by findings of late diagnosis, possible discrimination around treatment options, and lack of patient involvement and assessment of capacity in decision making. There are significant gaps in knowledge and training among most health professionals, leading to disengaged services that are unaware of the physical, emotional, and practical needs of people with learning disabilities, and their carers.