BackgroundCancer 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. AimTo provide insight into the experiences and needs of people with learning disabilities who have cancer. Design of studyProspective qualitative study, using ethnographic methods. SettingParticipants' homes, hospitals, nursing homes, and hospices in London and surrounding areas. MethodThe 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. ResultsParticipants' 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. ConclusionUrgent 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.

The response to bereavement by adults with learning disabilities is similar in type, though not in expression, to that of the general population. Learning disability is a significant predictor of mental health problems following bereavement. Participants adapted more easily when basic emotional needs had been constructively met by carers.

Despite small numbers, the quantitative findings were highly significant, were supported by the qualitative data, and were of practical relevance to primary care practitioners and specialist mental health and intellectual disability staff.

Accessible summary• The researcher visited twenty families over 2 years. In all of the families, there was a son or daughter (from 15 to 22 years old) who had severe or profound intellectual disabilities. This meant that the mothers had to do most things for them. They bathed and dressed them and helped them to eat. Many spent time in the night with them as well. Most of the young people could not speak at all. Many of them had epilepsy. They were very difficult to look after because they tried to hurt themselves or other people, or break up the furniture. • The researcher wanted to find out how the mothers coped with all they had to do and how they felt about their son or daughter. In spite of all they had to do the mothers felt very close to them and were determined not to let them go into longterm care away. The mothers thought that if they lived somewhere else they would not be cared for and loved as they were now. They also thought that bad things might happen to them, and because they could not talk no one would know. The mothers felt that people who lived in long-stay homes were not at all like their children. Many of them hoped that they would live longer than their son or daughter, so that they could stay at home and be looked after by their mothers all their lives. • Most of the families only saw their own sisters and brothers and other relatives now and again. They felt that other people did not really like having anything to do with them. This meant that they needed help and support from the social and health services, but they felt they had been let down by them as well. SummaryLittle research has focussed on the perspectives of families caring for someone with severe or profound intellectual disabilities and challenging behaviour. The main aim of this research was to gain understanding of the experiences and perspectives of families, especially mothers, of young people with these complex needs, including attitudes to long-term residential care. Ethnographic methods were used, consisting of intensive interviews over 2 years, mainly with mothers, and participant

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