A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers.

OBJECTIVES: To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified. DATA SOURCES: Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. REVIEW METHODS: Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques. RESULTS: Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings. CONCLUSIONS: The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.

Developing services to support parents caring for a technology-dependent child at home.

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.

Technology-dependent children in the community: definitions, numbers and costs.

OBJECTIVES: To assess available data on the numbers of technology-dependent children living at home in the UK and estimate the costs of caring for them. DESIGN: Data were obtained from all known secondary sources, including surveys of children with specific conditions known to specialist paediatric departments and the database of applicants to the Family Fund Trust. The costs of all services received by three hypothetical exemplar 'case study' children were calculated. RESULTS: All existing sources of data have some shortcomings. Taking these shortcomings into account, it is estimated that there may be up to 6000 technology-dependent children living at home. They appear to be disproportionately young and may be distributed unevenly between different regions of the UK. The total service costs of caring for each child will vary according to the types of technologies involved and local patterns of services, but may be as high as 150,000 pounds sterling a year. CONCLUSIONS: Because of the very high costs of services, routine information on the numbers of technology-dependent children discharged home is urgently needed. This should include details of the duration of technology dependence and the local area to which the child is discharged. New opportunities for joint service planning and purchasing should improve the co-ordination of services for these children.

Trends in community care and patient participation: implications for the roles of informal carers and community nurses in the United Kingdom.

This paper argues that the interfaces between formal and informal care-giving are changing as a result of two current trends; the increased scope of home-based nursing care and the emphasis on participation both within nursing and in the wider health and social care arenas. These various changes are explored in relation to the provision of intensive and complex nursing care in the home. It will be argued that the changing interfaces between formal and informal care have important implications for the respective roles of nurses and informal carers which hitherto have been relatively overlooked. These implications urgently need addressing in research, policy and public debate if professional nurses are to provide appropriate help and support to informal carers.

Annual assessments of patients aged 75 years and over: views and experiences of elderly people.

BACKGROUND: The 1990 contract requires general practitioners to offer all their patients aged 75 years and over an annual health check. Increasing importance is being placed on consumers' views of service provision. AIM: A study was undertaken in June 1992 to investigate elderly patients' views and experiences of the annual health check, and to compare these with the previously reported views of general practitioners and practice nurses who had also been surveyed as part of the study. METHOD: Twenty family health services authorities wrote to a sample of 1500 elderly patients asking if the patient's name could be passed to researchers. Patients who agreed were then interviewed. RESULTS: A total of 664 elderly patients (44%) were interviewed. Only 64% of respondents were aware of their entitlement to a health check. Vulnerable patients, such as those in poor health or who lived alone, were less likely to know about the health checks than other patients. Only 31% of respondents thought they had had a health check. Of these, fewer than half recalled the doctor or nurse discussing the findings with them, although 80% of doctors reported that they always or mostly discussed results with patients. Elderly patients were more likely to recall the physical aspects of the health check rather than discussion about particular health aspects. However, doctors and nurses felt that routine checks were useful for giving advice rather than detecting medical problems. Of those who had had a health check, 82% reported no improvement in their health as a result, but 93% thought that they were a good idea. Only 7% of doctors thought they were of value, compared with the majority of nurses. CONCLUSION: It appeared that the inverse care law was operating, with those more in need of the service being less likely to have known about it. Discrepancies were found between general practitioners' and practice nurses' reports of service provision and those of elderly patients. Evidence about the cost-effectiveness of regular health checks may help the conflict between professional scepticism and consumer enthusiasm for these assessments.

Dependency and interdependency: the incomes of informal carers and the impact of social security.

Consideration of the income and social security needs of informal carers has remained conspicuously absent from discussions about 'community care'. Similarly, carers have been more or less invisible in the development of social security policies. This paper reports on a study of the financial circumstances of a sample of working age carers, who were living with and providing substantial amounts of help and support to a disabled person in the same household. The study highlights first, the substantial work-related costs incurred by carers with full time employment; and second the financial dependency of carers without full time earnings, on their spouse, sibling or on the person being cared for. The implications of these findings are discussed in the light of recent developments in social security policies.

Voluntary organizations for handicapped children and their families: the meaning of membership.

Two surveys of families caring for very severely disabled children at home reveal that about half the families belong to a voluntary organization. Membership varies by disease, social class, income, family composition and locality. Over half the non-members would like to belong to such organizations and practical obstacles are the most common reason for not belonging. The principal benefits derived by members are the opportunities to share problems and exchange information and advice. In general such bodies hava a role that is different from and complementary to statutory services.