Services to support carers of people with mental health problems : overview report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO)

The aims of the study were to summarise available research evidence, to identify key gaps in existing knowledge and to identify priorities for further research in the area of services to support carers. The literature review examined and summarised evidence from published and unpublished literature (both UK and international) between 1985 and 2001 about effective and cost-effective services to support carers. In addition, a consultation exercise was carried out by group discussions and telephone interviews and explored the following: • people’s understandings of effectiveness and cost-effectiveness in relation to services to support carers of people with mental health problems • what research was seen as useful and/or a priority for future research • examples of perceived good practice.Eighty per cent of studies included in the literature review used quantitative methods, such as randomised and nonrandomised controlled trials, before-and-after studies (uncontrolled) or studies collecting post-intervention data. The remaining 20 per cent of studies used mainly mixed or qualitative methods. The majority of studies were experimental or quasi-experimental. Studies with long term follow-up were in the minority. Three-quarters of studies used standard outcome measures to evaluate effectiveness. As far as the 13 studies with an economic aspect were concerned, most studies included health care costs and social services costs. Overall, the analysis highlighted methodological weaknesses in the studies under review: small sample sizes, problems with follow up; problems relating to the use of control groups; and short follow-up periods. The consultation involved three groups of stakeholders: representatives from national statutory and voluntary bodies (n=27); managers and practitioners from local organisations that had taken significant steps to improve support to carers of people with mental health problems (n=18); and ‘key informant’ carers (n=19). In addition, a questionnaire was distributed to: delegates at two national conferences; members attending a meeting of a carers’ support workers’ network; and members of a national carers’ organisation.