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Rationale This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications The implications for end-of-life care and mortality research are discussed.

BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.ConclusionsAccess to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

Background: considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.Method: this paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all.Results: only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death.Conclusions: recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

Background Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. Results 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion Death affects many people with intellectual disability. Staff require training and support in communicating death.

Background: population‐based data are presented on the nature of dying in intellectual disability services.Methods: a retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF.Results: the observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.Conclusion: death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

The All-Wales Mental Handicap Strategy was received in 1983 as a forward looking policy designed to deliver a range of community services to people with mental handicaps and their families guided by a clear articulation of principles. A ten-year period was set, in which constituent counties would begin the process of developing local services to replace those traditionally available, aided by additional central finance especially allocated for the purpose. The commitment to achieve considerable service change in a way that accorded with a set philosophy led the Welsh Office to take concerted action to manage the Strategy and monitor its progress, attending to the planning infrastructure in counties, the basis for estimating needs, the content of plans, the formulation of progress reports, and the setting of priorities for action. This paper describes the way the Welsh Office has revised mechanisms for implementation of the Strategy in its first five years. It also reports changes in service provision achieved between 1983 and 1988. There is evidence of positive change in line with the aspirations of the Strategy, although progress in the initial years has been less good than may have been hoped. Time has been required for counties to make an effective response to the Strategy initiative. An acceleration of service development in designated core areas is anticipated over the second half of the ten-year period.

Background This paper describes a study of one aspect of the lives of mothers of children with intellectual disabilities. It focuses on their perspectives of their dealings with the professional and service worlds. Much attention has been given in recent years to developing and co-ordinating a multiprofessional and multiagency network of support around families. Although such aims can be seen as beneficial for families, there is also good reason to expect these to present problematic experiences for family carers. Methods Data are presented and analysed in this paper on mothers' perceptions of their dealings with professionals. The sample consisted of 30 mothers of young people with intellectual disabilities. The data were obtained by qualitative interviews. Results and discussion Overall, the study confirmed that mothers' dealings with professionals were highly problematic for them. They felt that such encounters could be based upon conflict and that their worth and character as mothers were being continually scrutinized. However, the data show that mothers were willing to challenge professional perspectives of their children and their needs. They embraced advocacy for their sons and daughters as part-and-parcel of being a mother. However, in doing so, they were much more hesitant and reluctant to raise any needs and aspirations for their own lives. They fear that in giving these voice, they could be seen and typified as selfish mothers. That is, their struggles to be taken as advocates for their sons and daughters would be undermined. The implications of these findings for research and service development are discussed.

Over recent decades, there has been a substantial increase in the proportion of women in the workforce with dependent children. However, this trend is not evident for mothers of children with disabilities. Their employment levels are greatly reduced. The present paper examines the nature of the restrictions which affect the employment participation of these mothers and explores the meaning work has for them. The data presented in this paper were derived from qualitative interviews with 18 mothers of children with disabilities aged between 5 and 15 years. These mothers found employment difficult. They encountered unusual time demands, and a lack of adequate and affordable child care. Furthermore, they felt that their employment opportunities were restricted by attitudes prevalent in society concerning appropriate roles for women, especially mothers of children with disabilities. The lack of opportunities to engage in employment led, in varying degrees, to feelings of isolation, a lack of fulfilment and low self-esteem. The mothers felt that they were on the periphery of society with little release from the pressures of caring. Mothers who had part-time jobs often did poorly paid work of low status, thereby encountering few opportunities to use their skills and abilities to the full. Those who attempted a full-time job experienced stress from the dual demands of home and work, and from a fear that they were failing as mothers. The present paper highlights areas which require attention to improve the employment experience of these mothers.

National strategies for the development of services for specific client groups are rare in Britain, particularly strategies to which governments pledge significant long term financial investment. This paper attempts to guage the impact of one such strategy, the All Wales Strategy for the Development of Services for Mentally Handicapped People (AWS) (Welsh Office, 1983) by comparing the goals of the AWS with changes in the nature and coverage of services which have followed its inception. Data on the provision of residential, day, education and family support services in Wales were collected in 1995 from county annual plans, Welsh Office statistical returns and questionnaires to county officers. These sources were cross referenced and the data compared with those reported in a companion paper (Beyer et al., 1991) for 1983 (the first year of the AWS) and 1988. Between 1983 and 1995, deinstitutionalisation accelerated, residential services were reprovided by combined statutory and independent sector action, size of residential settings reduced considerably, the range of day activities diversified, mainstream education was available to more children with learning disabilities, respite care became largely community based and the availability of domiciliary support increased significantly. Although the pace of change quickened between 1988 and 1995 compared to that in the first five years of the AWS, a wholesale reorientation of traditional services is far from complete. Changes in service provision in Wales during the course of the AWS are compared where possible to development elsewhere in Britain.

Continuing the theme of caring for vulnerable populations from January, Stuart Todd reflects on the care of people with learning disabilities at the end of their lives.

The last decade has witnessed a notable growth in instrumental family support services. While there exists a considerable literature on levels of consumer satisfaction with support services, their impact upon parents' commitment to the parental role has been less well addressed. Employing data derived from a qualitative, indepth study of the experiences of parents of 33 co-resident adult offspring with intellectual disabilities, this article examines some features of parents' lives which shape parents' needs for support and their assessment of the adequacy of support received. Support services were positively received in the way they interrupted, what would otherwise be, a continuous cycle of care. However, for some parents the nature of provision was such that support services heightened rather than moderated their sense of living a restricted lifestyle. Support services were insensitive to the life course dimension of parents' lives, operating upon a notion that parents required only respite. The findings suggest that support services need to adopt a more rounded view of parents if effective help is to be provided to them. This would include an understanding that parents wish to be creative with the time liberated by support services. The development of support services is discussed in terms of two phases. The first phase, and that which currently predominates, involves supporting parents through sharing the parental workload. The second, and less advanced phase involves supporting the person and his/her range of personal aspirations and interests. The implications which this latter phase may have for other forms of service provision are briefly discussed.

Background Research on staffed housing for people with intellectual disability has identified the challenges in achieving postitive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. Method In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. Results The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from ‘being there’ with individuals over those phases.