Services to support carers of people with mental health problems

Researchers: Hilary Arksey, Sally Baldwin, Jennifer Harris, Liz Newbronner & Philippa Hare (Acton.Shapiro)

Funder: NHS Service Delivery and Organisation R&D Programme

Duration: October 2001 to March 2002

Background - Key findings - Gaps in the literature - Recommendations for further research - Recommendations for dissemination and implementation of research findings - Publications

Background

Up to 1.5 million people in Great Britain may be involved in caring for a relative or friend with a mental illness or some form of dementia. Unless the amount of care provided by statutory services increases substantially, it is likely that there will be greater pressure for support to be provided by carers. Recent government policy, including the national strategy for carers and the National Service Frameworks (NSFs) for Mental Health and Older People, puts a high priority on meeting the practical, health, and emotional needs of this particular group of carers.

Objectives

The overall aim of the scoping study was to advise the NHS Service Delivery and Organisation (SDO) Research and Development Programme as to what further research should be commissioned in the area of services to support carers, including young carers, of working-age adults and older people with mental health problems. The five key objectives were:

to define what was meant by ‘effectiveness’ and ‘cost-effectiveness’ in relation to services to support the target group, recognising that the major stakeholders will have different perspectives on, and interpretations of, these terms
to examine and summarise the evidence from published and grey literature (both UK and international) about effective and cost effective services to support the target group
to ensure that the views of key stakeholders were central to the scoping study and informed its findings and recommendations
to draw on the evidence from the literature, and the consultation with relevant stakeholders, to identify the key gaps in existing knowledge and, where possible, to describe how these gaps are affecting development of services
to advise SDO on which areas should be a priority for further research, taking particular note of the requirements of the two NSFs, and the concerns and issues raised by different groups of carers or their representatives.

Research methods: literature review

The aim of the literature review was to scope the extent and distribution of the literature on the effectiveness and cost-effectiveness of services to support carers of people with mental health problems. Searches were made of key electronic databases and the Internet for studies published between 1985 and 2001. Other search strategies included hand searching, searching websites of key organisations, and contacting librarians of leading mental health organisations. Bibliographies of studies were checked to ensure referenced studies were included. Out of the initial 3867 references generated through the search strategy, some 204 were included in the scoping review. Thirteen studies included an economic evaluation. Relevant data were extracted from each paper and synthesised through a narrative review that included descriptive characteristics, as well as more substantive issues such as effectiveness, cost-effectiveness and gaps in the research.

Research methods: consultation

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)
‘key informant’ carers (n = 19).

The overall aims of the consultation were:

to explore understandings of effectiveness and cost-effectiveness in relation to services to support carers of people with mental health problems
to find out what research was seen as useful and/or a priority for future research
to identify examples of perceived good practice.

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.

Key findings

Interventions and services to support carers

Type and focus of interventions There were commonalities in the types of interventions and services provided by statutory and voluntary sector services and the evaluation studies of interventions that were included in the literature review. The majority of the studies focused on educational programmes, breaks from caring and family interventions. Locally, organisations were introducing a wider range of breaks for carers, funded through the Carers Special Grant, as well as providing educational and training programmes and support groups and social events. A new development in some areas was the appointment of specialist mental health carers’ workers either as carers’ development workers or carers’ (or family) support workers.

Patterns of service provision Participants in the consultation shared the view that there was no one ‘ideal’ blueprint or service model. There was a belief that if services were to be effective, they should be tailored to local needs and circumstances. Contributors were clear that support for carers was likely to be most effective when offered as part of a holistic response to the family situation.

The literature review included evaluation reports from the USA of very large multi-site, multidimensional approaches to interventions. These studies provided modest evidence to endorse the view of contributors that it is important to provide a co-ordinated range of services to meet carers’ different support needs and to offer carers some choice.

Underlying principles of service delivery Few service delivery issues emerged from the literature review; most studies looked at the effectiveness of specific interventions in terms of outcomes and failed to take account of underlying processes and social context. However, a consensus view emerged from the consultation that, to be effective, services should be underpinned by four underlying principles.

Positive and inclusive: mental health professionals should have a positive approach to carers, involve them in decision making and recognise them as ‘partners’ or ‘co-experts’.
Flexible and individualised: services should be person-centred, reflecting the diversity of carers.
Accessible and responsive: services should be available at all times, including outside ‘office hours’, and able to offer a rapid response.
Integrated and co-ordinated: services should be ‘joined up’; carers’ services should be embedded within mainstream mental health services.

Effectiveness and cost-effectiveness

Participants in the consultation conceptualised effectiveness in terms of benefits for the carers; benefits for the person supported; benefits for the family as a whole; impacts on service usage and long-term outcomes for society. Studies included in the literature review were consistent to a degree, in that as well as assessing outcomes for carers, some also looked at outcomes in relation to care recipients and families as a whole.

Contributors had mixed views about how best to evaluate effectiveness. Their suggestions included measures of service utilisation rates, performance indicators, satisfaction surveys and evaluation forms. However, the majority of studies included in the review used standard outcome measures to evaluate the effectiveness of interventions. As far as cost-effectiveness was concerned, contributors felt it was important to incorporate quality issues relating to the support provided rather than simply to use quantitative measures such as cost per carer or cost per hour.

The literature review found:

a lack of clear evidence to support any specific intervention for the target group, although almost all studies were able to identify some positive outcomes of services provided
cost savings reported for a range of interventions, resulting from decreased use of hospital-based care. However, there were methodological weaknesses in all studies with this conclusion.

Research methods

Eighty per cent of studies included in the literature review used quantitative methods, such as randomised and non-randomised 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 outcomes measures to evaluate effectiveness. Carer burden, stress, coping, physical health, emotional well-being, depression and knowledge levels were commonly measured. As far as the 13 studies with an economic aspect were concerned, most studies included health care costs and social services costs. One study valued carer time while two assessed changes in carer earnings.

Overall, the analysis highlighted methodological weaknesses in the studies under review: small sample sizes, problems with attrition; problems relating to the use of control groups; short follow-up periods.

Contributors to the consultation were keen to see short-term, policy driven research, as well as longer-term, more in-depth policy-related studies. They believed that research-based evidence should complement other sources of knowledge, for example local research and consultation endeavours, and good practice exchanged through national and local networks.

Gaps in the literature

The literature review analysis identified clear gaps in the literature in relation to: carers assessments; care plans; comprehensive packages of care; breaks from caring; the use of telephone help-lines and computer based interventions; the elements of a multidimensional package that were effective and cost-effective, and in what combination; the relationship between the different stages of an illness and specific interventions.

Two significant gaps in the literature related to services for children and young adult carers, and black and ethnic minority carers. Gaps in relation to services for carers of specific mental illness conditions included acute or chronic severe depression; severe eating, anxiety or sleep disorders; substance abuse.

Contributors talked more in terms of suggestions for further research. In terms of service delivery and interventions for carers, the following areas were suggested:

individual interventions, including: training and education; independent advocacy; information; carers’ workers; support groups for carers
comparative research into the effectiveness of different interventions to support carers
multi-agency or integrated services; the balance between specialist mental health carers’ services and generic carers’ services
the effectiveness of early intervention for carers supporting a person in the early stages of the disease trajectory
the relationship between providing support for carers and the health (including use of health services), ability to cope or quality of life of the person supported
how to improve access to services, and in particular increase take up by ‘hidden’ carers.

In terms of the relationship between carers and mental health services, contributors were keen to see:

research to inform how attitudes within mental health services could be changed
short-term, practical research into how barriers to information sharing could be overcome
research into how and when to involve carers in decisions about the care recipient’s care, and the effect such involvement might have on outcomes for both parties
research into effective ways to involve carers in decision making at a service/planning level
quick and practical research into the implementation and impact of carer assessments.

In terms of supporting specific groups of carers, contributions raised the need for research into:

young and young adult carers
black and ethnic minority carers
carers of people with dual diagnosis
carers supporting more than one person
less-common caring situations (for instance, research into caring in a same-sex relationship or caring at a distance).

In terms of research design, contributors wanted to see:

longitudinal research that looked at the impact of caring and the impact of new policies and systems
relatively short-term, practical research which could directly influence service planning and delivery in the short to medium term
rigorous qualitative research that encompassed the experiences and perspectives of carers, people with mental health problems and mental health professionals.

Recommendations for further research

On the basis of the evidence from the literature review and the consultation, the following recommendations are made for commissioning further research concerning carers for people with mental health problems, as detailed below.

General approach

Support for carers of people with mental health problems needs to be offered through flexible packages of services that are tailored to suit the individual carer-care recipient; that are underpinned by key service delivery principles such as inclusiveness, responsiveness and coordination; that take account of local contexts. Packages are likely to vary, reflecting diversity of carer experience, patient diagnosis and stage of illness, and differing methods of service delivery. It is important to identify and examine what both carers and care recipients believe is effective in terms of the range of services available and explore how best these can be delivered in order to lead to improved outcomes for both.

As well as experimental research, more studies should be undertaken of services and interventions in their ‘natural’ or ‘everyday’ health and social care context. Rather than focusing on interventions in isolation, there is merit in examining different components of integrated packages of care to assess their relative effectiveness, while also seeking to identify whether there is any ‘added value’ for carers. Research teams need to be multidisciplinary (embracing both qualitative and quantitative researchers) and should include researchers with a track record of experience in the methodology of study design and outcome evaluation.

Research methods

Current research methods are not always able to address the complex issues involved in providing carers with services. Studies should be commissioned that:

use more diverse research methods
adopt more innovative approaches to developing, implementing and assessing interventions
develop and apply alternative approaches to determining the effectiveness of interventions alongside standard outcome measures
are powered to detect statistically significant differences in both effectiveness and cost-effectiveness measures
are longitudinal and capable of testing the effectiveness and cost effectiveness of interventions and services in the longer term
are longer-term, not policy driven but policy relevant
are short-term, focusing on current issues and policy implementation.

Individual interventions relevant to current policy

Individual interventions warranting further research are:

carers’ assessments
breaks from caring
family support
educational and training programmes
support groups for carers
telephone and computer-based technology
provision of information, advice and independent advocacy.

Other research areas

Other interventions and services worth further investigation are:

multidimensional packages
co-ordination of support
changing attitudes to carers within mental health services
impact of service provision on care recipients.

Supporting specific groups of carers

Research is required focusing on interventions for specific groups of carers, in particular:

young and young adult carers
black and ethnic minority carers
carers in less-common caring situations (for instance, caring in a same-sex relationship; caring at a distance)
research differentiating between the effectiveness of interventions for: spouse and non-spouse carers; male and female carers; urban and rural carers; working and non-working carers
research into the effectiveness of services for carers of people with mental health conditions such as: depression; eating disorders; anxiety disorders; substance abuse; and those with a dual diagnosis.

Cost-effectiveness

To address gaps in relation to economic components.

There is scope for further economic research in all care recipient groups and all interventions, with the possible exception of assertive outreach for patients with severe mental illness.
It is particularly important that multidimensional packages are evaluated to identify which elements, and in what combination, are cost-effective and for whom.
Ideally, economic evaluation should be conducted alongside intervention studies, with economic and effectiveness data collected at the same assessment.
Studies should be powered to detect changes in both effectiveness and cost-effectiveness.

Recommendations for dissemination and implementation of research findings

Efforts should be made to ensure that research findings are more widely available and accessible to potential readers. When commissioning research, adequate funding should be made available; research bids should include this stage of the work in the proposal, with appropriate budget.

Publications

2004

Support services for carers: methodological issues in evaluating the literature, 2004
Arksey, H., Jackson, K., Mason, A., Wallace, A., Weatherly, H., Research Works, 2004-03, Social Policy Research Unit.

2003

Scoping the field: services for carers of people with mental health problems, 2003
Arksey, H., Health and Social Care in the Community, 11, 4, 335-344.

2002

Literature Review Report: Services to Support Carers of People with Mental Health Problems, 2002
Arksey, H., O'Malley, L., Baldwin, S., Harris, J., Mason, A. and Golder, S., National Co-ordinating Centre for NHS Service Delivery and Organisation.

Impact of research

"This research has influenced several national policy documents, including a Social Care Institute for
Excellence (SCIE) position paper on developing social care and the Equality and Human Rights Strategy & Action Plan (Access to Health and Social Services) in Northern Ireland ..."

Case study from The Impact of the NHS Service Delivery and Organisation Research and Development Programme 2001-2006 (pdf 46KB)

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