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Background: Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer., Aim: To explore the experiences of people with learning disabilities who have cancer., Method: The study used participant observation with 13 people with learning disabilities. All had a cancer diagnosis and 10 were terminally ill. Participants were visited regularly at home and in other settings, including hospitals., Results: The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience., Conclusion: To understand the experiences of people with learning disabilities who are dying of cancer, it is important to understand their previous life experiences and key relationships. Healthcare professionals who treat people with respect, dignity and openness can make a positive difference to their care.

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.

Background: Community-based health and social care professionals have little knowledge of the past experiences of people with severe learning disabilities and challenging behaviour who are living in institutions., Aims: To gain a greater understanding of the experiences and needs of men who are living in a locked ward., Method: The study sample consisted of 20 men who were living in a locked ward of a long-stay institution. Qualitative (ethnographic) methods were used, involving participant observation (for around 250 hours) on the ward. All traceable families were interviewed. The analysis used grounded theory, and material was fed back into the resettlement process throughout., Results: The men's lives were emotionally, socially and physically deprived. Their individual, gender and social identities were not recognised, and their general health and mental healthcare needs were inadequately addressed., Conclusions: People who live in long-stay institutions, segregated from society, lose their individual and social identity, which complicates the presentation of mental health and behavioural problems, and raises important adult protection issues.

The subject of sexual abuse is a major focus of professional and public concern. Sexual abuse of (and by) people with learning disabilities evokes even greater disquieting emotions, and makes severe demands on the social services, and the criminal justice system. The aims of the project were: 1) to determine whether group psychotherapy produced effective outcomes for adolescent boys with learning disabilities who exhibit sexually abusive behaviour, 2) to explore the perspectives of parents and other care-givers, and 3) to document the nature and extent of service support to families. This paper focuses solely on the mothers' perspectives. This was a three-year project with six boys (under 16) receiving group psychotherapy, using both quantitative and qualitative methods. Clinical measures were used to track changes throughout the course of psychotherapy. Semi-structured interviews (taped and transcribed) were held (separately) with the boys, their parents, paid care-givers and the therapists. The mothers tried hard to make sense of, and come to terms with, what was happening to their sons and to themselves, they struggled to reconcile their own confused and often conflicting emotions, and to maintain their own sense of identity. They felt almost totally unsupported by the services, both in the past and present, and could see little hope for the future. There is an urgent need for development of effective and sympathetic services for the parents of boys with learning disabilities who have been abused, and who are now showing abusive behaviour.

Previous research into deinstitutionalization has largely ignored the perspective of people with intellectual disabilities, especially those with severe intellectual disabilities. This research aimed first to understand how women with severe intellectual disabilities experienced transition from a locked ward of an old long-stay hospital into other homes, and second, to determine the extent to which their lives changed in their new homes. Ethnographic methods were used, including participant observation, interviews and document analysis, in order to get to know the eleven participants and the nature of their daily lives. The study found that the experience of the move was largely negative for all the women: they were not involved in the process of their move, little information was transferred to their new homes and they were insufficiently supported. The study also found that for the majority of the women little changed in their lives in their new homes, although this depended on where they moved to. Those who moved to a campus home continued to lead lives restricted by rigid routines, strict rules, few daily activities, and few opportunities for relationships beyond the staff team. Those who moved to homes in the community had more opportunities to make choices, learn new skills and explore new activities. The study found that, in general, the women continued not to be acknowledged as unique individuals, who have pasts, close relationships, clear preferences, abilities and rich emotional lives. The study highlights the needs of women with severe intellectual disabilities in their move out of long-stay hospitals, and in the planning of their futures. [ABSTRACT FROM AUTHOR]

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded. [ABSTRACT FROM AUTHOR]

Background This paper reports on the follow-up of a cohort of parentally bereaved adults with learning disabilities. Aims To investigate whether significant psychopathology, present upto 2.1 years after the death, had resolved five years later. Method Of an original sample of 50 adults with learning disabilities, 41 were reassessed. The Aberrant Behaviour Checklist and the Psychopathology Instrument for Mentally Retarded Adults were re-administered to carers. Results At follow-up, there was a small increase in the measures of aberrant behaviour. Measures of psychopathology showed improvement, and in particular there was a reduction in anxiety. Conclusions 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. [ABSTRACT FROM AUTHOR]