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.

Disputed diagnoses: the cases of RSI and childhood cancer.

Recently, greater emphasis has been accorded lay views and involvement in debates on health care provision. At the macro level, policy makers are urged to take heed of the opinions of the general public when formulating new policies for health care or making changes to existing ones. Furthermore, it is suggested that this accommodation should be repeated at the level of the individual, namely in encounters between doctors and patients. However, imbalances in the doctor-patient power relationship, compounded by structural barriers, can create problems which prevent this sort of collaborative interaction from taking place. Against this background, the paper draws on evidence from studies of two quite different conditions, repetitive strain injury (RSI) and childhood cancer, to explore lay perspectives and empowerment in relation to obtaining a diagnosis. The findings of the studies are scrutinised in respect of four related areas of concern: how much lay views count, exercising choice, referral pathways and the withdrawal of trust from medical practitioners. The evidence suggests that a substantial number of patients with RSI and parents of children with cancer felt their experiences and knowledge were disregarded by doctors in the diagnostic process. Denying the validity of an individual's perceptions had implications for obtaining an accurate diagnosis, which could in turn make access to appropriate health care and treatment problematic. Their experiences led some people with RSI to show a general distrust of medicine; this was less the case for parents of children with cancer. A key issue to emerge from the analysis is the need for additional training in two areas of the medical curriculum: communication skills and occupational health problems. The underlying problems of attitudes, especially giving weight to the informed views of lay people, is another matter which needs to be addressed.

Carers tell it like it is.

Carers want a great deal more medical and practical information than they are given at present. Their need for information may conflict with doctors' duty of confidentiality. Carers are often taking responsibility for day-to-day care while being kept in ignorance of many aspects of the patient's condition. Health professionals would not accept responsibility in these circumstances. Unless the availability of information, and its delivery, becomes more methodical, carers are likely to remain critical of health and social services.