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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH
1 INTRODUCTION
AIMS AND OBJECTIVES
1.1 This report presents a review of research literature relating to the range and quality of community care services for older people in Scotland. The review focused on outcomes for service users and informal carers, identifying and assessing work conducted in this area and outlining any gaps in the evidence base to inform the development of policy and practice on social care services for older people. Research relating to older people's perspectives is of particular interest throughout this review. The review was completed in November 2003.
1.2 The review set out to identify evidence of differences in service use and availability with respect to geographical location, age, gender or ethnicity; and differences in service use and availability experienced by groups of older people with distinct needs.
1.3 While most of the studies included were conducted in Scotland, some reference is made to research literature from other parts of the UK and abroad where this has direct relevance to Scottish concerns and fills a gap in the Scottish literature. The highly selective nature of these references was necessitated by the short timescale allowed for the review. Other recent and ongoing literature reviews of a more specialist nature are referred to which will provide supplementary information particularly in relation to models of good practice.
1.4 The review was commissioned by the Scottish Executive in July 2003 and completed in August and September. It was limited to completed research which has been published and ongoing, uncompleted research.
Sources
1.5 The main resources for the literature searches have been specialist libraries and electronic databases. The specialist libraries used include those of Age Concern Scotland, the Dementia Services Development Centre at Stirling University, and the Centre for Policy on Ageing (CPA) in London which runs AgeInfo. AgeInfo offers a bibliographic database of over 40,000 books, articles and reports from the CPA's specialist collection on Social Gerontology. A list of electronic databases and websites used in the search is at Annex 1. Ongoing and recent research, not yet published, has been identified through internet searches and personal contact.
POLICY CONTEXT
1.6 Since the late 1990s the language of 'efficiency and effectiveness' which dominated policy discourse has been replaced with a less managerial vocabulary. Where community care intervention was to be 'needs-led' in the earlier discourse, the current term is 'person-centred'. 'Outcomes' measured in terms of assessments completed and care packages arranged are no longer viewed as appropriate performance indicators. The NHS and Community Care Act (1993) urged local authorities to consult people in their communities and to involve individuals in decisions about their care. Ten years later, the active participation of service users and carers is taken for granted by national and local agencies and service user-led organisations have multiplied.
1.7 Community care policy in Scotland has continued to pursue the aim of supporting people in their own homes. Additional resources have been allocated to local authorities to provide intensive home care packages, and 'intensive care management' is advocated as a means of targeting care management resources on the most complex cases.
1.8 During the period covered by the review, principles and standards for good quality care have been drawn up by the National Care Standards Committee in consultation with a wide range of stakeholders including people who use services. In a new legislative framework set out in the Regulation of Care (Scotland) Act 2001 the Care Commission now has responsibility for establishing registration and inspection systems so that standards can be monitored and maintained.
1.9 Joint planning and delivery of services, with particular attention to health and social work services, has for some years now been the long-term focus of community care policy. In Scotland, the Joint Future Agenda (Scottish Executive 2000a, 2000b) sets out a programme for the development of better integrated and more coherent community care services. The first stage of the programme is the implementation of single shared assessment.
1.10 The report of the Expert Group on Older People (Scottish Executive 2002a) demonstrates the strategic importance of the joint agenda in its comprehensive coverage of the care needs of older people. In recommendations for tackling problems in the system - such as unmet need for rehabilitation, delayed discharge, inappropriate hospital admission and inadequate community supports - this report highlights time and time again the necessity for multi-agency and multidisciplinary solutions.
Social Justice
1.11 Social justice and equity are generic Scottish Executive policy aims. Community care policy aims to address inequalities in availability and delivery of services throughout Scotland and between particular groups of people. Anti-ageism is a dimension of Social Justice and community care has a particular role to play in achieving the aim of increasing the number of older people who enjoy active, independent and healthy lives. More specifically, the Social Justice Annual Report (Scottish Executive 2002b) states that good services which are accessible and effective should be designed to meet people's needs - better public services mean better working between all those involved in planning and providing the service, including people who use them.
Involving service users and carers
1.12 The idea that older people can and should have a role in the development of policy which affects them has received strong endorsement at national and local government levels. It is now common practice to make arrangements for older people to contribute through participation, partnership working, consultation, and information giving.
1.13 Systems for monitoring progress in the Joint Future Agenda are being developed as part of the Joint Performance Information and Assessment Framework (JPIAF). Reflecting the commitment to take account of service users' perspectives, the JPIAF have commissioned Infusion Cooperative 1 to develop research based methods to assess service user and carer satisfaction with single shared assessment. The intention is that the resulting toolkit will enable service users to express their views using a range of communication modes.
1.14 Research and statistical analysis is necessary for understanding the implications of age and ageing for policy, and in planning and developing effective and responsive services. In recent years the Scottish Executive has commissioned numerous studies and reviews concerning older people and their need for services which reflect particular policy concerns. The work of the Care Development Group on the introduction of free nursing and personal care in Scotland was informed by a set of specially commissioned research projects. Of particular interest to the current review is a study of attitudes to the provision of free personal care amongst older people using services. The impact of the new policy of free personal and nursing care for older people is likely to be significant but remains unexplored.
RESEARCH CONTEXT
1.15 During the 90s community care research was dominated by interest in the changes brought about by the NHS and Community Care Act. The particular themes were identified in a review of research by Harper (1999) commissioned by the Nuffield Foundation:
- efficiency and effectiveness - the relationship between resources, needs and welfare
- implications of the mixed economy of care and the role of the private sector
- the role of informal carers.
1.16 Whilst the Harper review had a broader remit than the current one, it provides a useful benchmark against which to assess trends in community care research in the years since it was published.
1.17 Having reviewed the existing literature, Harper identified the following important areas where research was needed.
research at the interface of medical and social care
Harper identified limited opportunity and support for inter-disciplinary and inter-professional understanding across the medical/social divide: "not only does the interface between medical and social care become increasingly blurred in later life, but there are several research areas which would greatly benefit from acknowledging the complete spectrum of medical and social aspects to healthy successful ageing".
research to help understanding the personal strategies and decisions which influence people in their use of services
Harper advocated research and policy which "restores the individual, their family and support network to the centre of the research question" .
housing issues
Whilst there was a significant body of research on housing as an integral part of community care, there had been virtually no research to help our understanding of the extent of, or the reasons for, homelessness - understanding which could contribute to effective interventions.
minority ethnic groups
Harper points out that little is known about the relationship between older people from minority ethnic groups and the health and social care provision appropriate to their needs, nor about the cultural and social context of their specific experiences of ageing.
1.18 The needs of minority ethnic groups including older people was the subject of a literature review commissioned by the Executive's Development Department and is an important source of information for the current review.
1.19 A recent scoping study presents a wide range of descriptive material about older people in rural areas (Philip et al 2003).
Service user and care perspectives
1.20 Pervading much of the research in the social care field was, and is, a concern with developing meaningful measures of outcomes from the perspectives of service users. This concern has produced quite distinct methodological approaches. On the one hand, researchers have developed and tested highly structured instruments for measuring well-being, quality of life, satisfaction etc. These can be used in statistical analysis which aims to account for variation in outcomes in terms of variable inputs (models of care management, care packages, costs etc). On the other hand, exploratory and qualitative research aims at more detailed formulations of good and bad outcomes which can feed into the development of good practice.
1.21 Involving service users in research and seeking their views has become a necessary feature of community care and health service research, not least because service users are asserting their right to be heard. Increasingly, service users and others judge the validity of research on service delivery and organisation by the extent of service user involvement and the methods used for seeking their views.
1.22 The effective organisation and delivery of services depends on service users' views being heard. Health and social care services involve collaboration between professionals, caregivers and service users. Research which takes account of service users' views is essential for planning and delivering person-centred services. This view is reflected in the Research Governance Framework for Health and Community Care which specifies, as one of the criteria for good quality research, that -
"Research is pursued with the active involvement of service users and carers including, where appropriate, those from hard to reach groups such as the homeless."
1.23 Interest in participatory research reflects the more general movement amongst users of health and social services towards greater involvement in decisions which affect their lives. During the 90s this movement was most clearly articulated by organisations of younger disabled people and users of services. More recently, organisations of older service users have become increasingly vocal and involved in local and national consultation and decision making. Researchers and research commissioners pay attention to such developments - a growing body of literature presents a range of approaches to involving service users as research participants.
Issues of methodology
1.24 This review focuses on research concerned with the experience and perspectives of older people themselves and their unpaid carers. This reflects current trends in policy and practice towards the promotion of person-centred practice, of participation and empowerment for users and carers, and interest in user satisfaction measures in performance monitoring. The changes in attitudes and expectations which have produced these trends have also been influential in research: the period covered by this review has been one of intense methodological debate and exploration for researchers in the field of community care.
1.25 These methodological debates have been strongly influenced by the disability movement and the demands from users of services and unpaid carers for more say in the way services are planned and delivered. Issues under discussion include: ethical processes for obtaining informed consent from research participants (Hubbard et al 2001); confidentiality; methods for including in research samples people who need support to help them communicate (Murphy J 1998; Stalker et al 1999a); and participatory approaches (Hanley 2000). In the NHS in England INVOLVE (formerly 'Consumers in NHS Research'), and in Scotland 'Involving People' are committed to disseminating good practice in seeking service users' and patients' views in health service research.
1.26 The views of people with dementia in particular have been under-represented in research but recent work discussed later in this review has demonstrated that this is not inevitable. Wilkinson (2002) brings together a wide range of material covering these ethical and methodological issues as they relate to research involving people with dementia.
1.27 Participation in research by research 'subjects' can occur at a number of levels. Minimal participation occurs when older people are asked to respond to interviews as research subjects and are provided with feedback. At a slightly higher level of involvement lay people or representatives of organisations of older people may be invited to join advisory groups overseeing research. A much greater degree of participation is evident in research when older people are involved in group discussions/workshops to help formulate research questions and methods, and participate in collection and analysis of data. These innovative research practices share the methods and approaches used in consultation exercises involving service users (Barnes and Bennett 1998).
1.28 Researchers have also borrowed from systems theory when seeking collaborative approaches which aim "to reflect the diversity of the arena of care and to explore systems rather than discrete services". Appreciative Inquiry is one such approach - a method for exploring positive aspects of the social world with the aim of making systemic improvements (Reed et al 2002).
1.29 Amongst other things, these trends have brought renewed interest in action research in its broad sense of a community-based method used to study social systems with the aim of changing them (Bowling 1997). Fulop et al (2001) characterise action research as an approach rather than a method which is committed to doing research with or for people rather than on them. Action researchers treat participants as partners in research, empowering them by passing on research skills and knowledge to actively bring about change (Hart and Bond 1995). A community development approach is also evident in the 'rapid appraisal' method developed by Murray (1999) in primary care. Rapid appraisal, action research and participatory research methods share a common aim of using the process of research to directly bring about change.
1.30 Research commissioners are also influenced by the development of a culture in which service users and carers are increasingly characterised as partners rather than clients. This is reflected in the subject matter and focus of much of the research included in this review. Both researchers and research commissioners, particularly the charitable foundations, when evaluating community care services look for ways to achieve practical outcomes from research. Thus participatory research with service users and carers is not seen as desirable for its own sake, but as a way of increasing the capacity of service users to exercise choice and control and thereby produce better outcomes in terms of community care (Carter and Beresford 2000; Reed et al 2002).
SCOPE AND STRUCTURE OF THE REVIEW
1.31 The criteria agreed for the inclusion of 'Scottish' literature in the review are set out below:
- the research has been published since 1998 - or is ongoing research which has not yet been published;
- all, or a significant part, of the fieldwork for the research was conducted in Scotland;
- the research questions focus on outcomes for service users and/or informal carers;
- the research is not purely descriptive but employs valid quantitative or qualitative methods of analysis.
1.32 The review is divided into sections which relate to aspects of community care services as follows: assessing need in the community; assessment and care management; support at home; long-term care; and dementia care. At the end of each section there is a short summary.
1.33 The final section of the report is a discussion around themes which are common to the research reviewed as a whole. These themes are: gaining a Scotland-wide view; promoting collaboration and new models of joint working; hearing the voice of service users and carers; taking account of minority ethnic groups; exploring issues of equity and ageism; and analysing the effect of workforce issues on quality of care.
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