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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH
7 DISCUSSION AND CONCLUSIONS
7.1 What does the research covered in this review contribute to promoting effective community care for older people and what more could be done? The purpose of this final section is to draw conclusions about what topics are adequately covered by research and what areas need attention.
7.2 One of the difficulties inherent in a review of this type is that however the material is sub-divided there is a risk of running counter to a basic principle of community care: person-centred approaches and integrated systems are not promoted by discussing services separately. For this reason, this final section is structured around a set of themes prompted by the review and by current policy concerns and relevant for community care research in general. The 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;
- analysing the effect of workforce issues on quality of care.
Gaining a Scotland-wide view
Key point 1 Research could contribute more to a Scotland-wide view of provision for older people if better use were made of existing data sources, including national surveys and information collected by the Scottish Executive for monitoring purposes. |
7.3 This review identified very little research which can properly claim to give a Scotland-wide view of community care. Two obvious reasons for this are highlighted: one related to resources and the other to the different interpretations made of community care policy and guidance by different stakeholders.
7.4 Limited resources in terms of timescales and budgets mean that studies which achieve Scottish coverage are limited in the depth of information they are able to collect (Stalker and Campbell 2002). More in-depth studies (Accounts Commission 2001; Curtice et al 2002) limited to small samples of local authorities can claim to be representative only to the extent of including urban and rural areas and contrasting models of service delivery.
7.5 Marked variation in how local authorities implement policy causes problems for research which aims to produce a national picture or to compare one local authority with another (Hall 2001; Stalker and Campbell 2002). The problem for researchers arises from the lack of a common language shared not only between the Scottish Executive and local authorities but also between local authorities. Consultation with local authorities is the standard way for common understanding of data collection requirements to be achieved and this is the practice used in the development of annual statistical return systems. For one-off research exercises consultation of this kind is more limited by time and other resources. This raises the question of whether reviews/snapshots should be conducted in ways which are replicable so that better use is made of investment in research and change can be tracked over time.
7.6 The same argument could be applied to data collected by the Executive for administrative purposes. Monitoring the implementation of policy is a key function of the Scottish Executive which collects large quantities of data in the form of, for example, responses to letters, consultations and community care plans. Some of these data may be of value for research, providing a basis for more in-depth or longitudinal investigation than is called for by the immediate needs of administration. The collecting and processing of the data could be made more efficient by using simple database techniques for storage and retrieval. This would mean that data were stored and instruments retained for use in repeat exercises when required as well as being available for research purposes. This has two obvious advantages: firstly saving on time and effort in developing new instruments; and secondly the possibility of observing change by comparing two or more time periods.
7.7 Hinds et al (2001) in their review of data sources for social research identify strategic issues of relevance for this review. They emphasise the cost of collecting good quality data and the need to exploit existing data whether collected for statistical, research or administrative purposes. This requires increased awareness of existing data sources and readiness to share information paying proper attention to ethical and data protection guidelines.
7.8 Longitudinal datasets maintained for health service research in Scotland include 1921 and 1936 Scottish Birth Cohorts and the MIDSPAN Studies in Renfrew/Paisley (Hinds et al 2001). Since 1999 the Scottish Household Survey (SHS) has provided a rich source of information about older people living in households. The value of SHS data will increase over time.
7.9 Very limited use has been made to date of the SHS as a source of information about need for support and use of services. For the first detailed analysis of 1999 SHS data relating to older people (MacDonald et al 2001) complete data on care given and received were not available. A second, ongoing analysis of data collected in the first 4 years of the survey will present results on older people's self-perceived need for and use of formal and informal care services. This analysis will present Scotland-wide results but there is also scope for using the SHS for comparison between local authorities.
Promoting collaboration and new models of joint working
Key point 2 Action research and other participatory approaches bring service users' perspectives to the heart of the service development process. There is scope for more collaborative research and development work in Scotland and better dissemination about successful projects. |
7.10 During the 1990s a body of evaluation literature grew up around new kinds of projects providing integrated nursing and personal care for very dependent people in their own homes. This review uncovered remarkably little more recent research evaluating new models of joint working. We have plenty of evidence from research of the shortcomings of community care delivery and its failure to provide what older people want, but relatively little from which we can learn about successful ways of working.
7.11 In part 2 of the review, older people's priorities for improving and maintaining their quality of life are presented in research by MacDonald (1999), Bowes and Dar (2000) and by Nuffield (1998). Findings from these studies clearly show the issues which have to be tackled by agencies providing social care, health care, transport and housing, and the need for collaboration between agencies if community care is to be more responsive to older people's needs and aspirations. However research of this kind is of limited value unless it feeds into planning and development.
7.12 Milligan's (2001) and MacDonald's (1999) research draw attention to the importance of consistent funding for community-based groups and services. Milligan also highlights differences in the extent of community care networks in urban compared with rural areas directly attributable to demographic factors.
7.13 Evaluations commissioned by health and social care agencies and available only as 'grey' literature were outwith the scope of this review. An ongoing review of joint practice is needed based on such literature and using information submitted to the Joint Future Unit by NHS boards and local authorities in the form of plans. It would be helpful for findings from such a review to be published at regular intervals on the internet.
7.14 The experience of collaborative research and development appears to make a positive contribution to the aims of improving practice, breaking down professional barriers and involving service users and carers. The review identified innovation in England in the form of research and development exercises such as the hospital discharge study described by Reed et al (2002) and the EPICS project of Foote and Stanners (2002). These projects use research as a stepping stone towards achieving more person-centred practice and tackling problems in a holistic way. Scottish work of this nature, if it is taking place, is not represented in the published literature.
7.15 The review uncovered surprisingly little evidence about health and social care agencies working jointly and the effect this has on outcomes for service users and carers. There is a need for more published material in the form of independent evaluation of innovative practice to inform us about what whether and how such practice works effectively. There is also a need for published evidence of the effectiveness of community development and action research methods in bringing about effective joint working.
Hearing the voice of service users and carers
Key point 3 Active collaboration between researchers and practitioners has produced a wealth of new methods and insights which allow people with dementia to be included in discussions about their care, something which was unheard of ten years ago. Health and social service research has a great deal to learn from dementia research about how to 'hear the voice' of service users and carers. |
7.16 The phrase 'hearing the voice' is associated with research and development in the field of dementia care which aims to overcome communication barriers between people with dementia and others. Work in this field has shared common interests and techniques with work involving people with learning disability. There has been considerable progress in dementia research since Moriarty's 1998 review when she commented that research effort to find ways of evaluating services from the perspective of people with dementia was at an early stage. Researchers and practitioners now have available an impressive body of literature to guide them in communicating with and consulting people with dementia about the services they use.
7.17 Research on the views and experiences of people with dementia discussed in this review provides abundant evidence that communication and consultation is possible provided appropriate methods are used, and enough time taken. This research has implications for practice in terms of how individual carers and professionals relate to people with dementia. It also has implications for service providers and planners who in the past have looked to third parties to speak on behalf of people with dementia.
7.18 The techniques of observation described and methods of support for communication developed by researchers in the fields of dementia and learning disability also have wider application. Research with frail older people, people with sensory impairments, and people with distinct ethnic and cultural backgrounds may all benefit from the inclusive and sensitive approaches discussed in this review.
7.19 Use of such approaches are fundamental to what Harper refers to "restoring the individual to the centre of the research question" ( see Introduction). They are also relevant in participatory and collaborative research in which service users and carers are playing a part. The 'active involvement of service users and carers in research' required by the Research Governance Framework is meaningful insofar as the mechanisms for involvement allow people's voices to be heard.
Taking account of minority ethnic groups
Key point 4 We know more now than five years ago about the experience which older people from minority ethnic groups have of community care. More research is needed involving people from a wide range of ethnic groups and parts of Scotland to help to overcome ignorance and prejudice which stand in the way of more equitable service provision. |
7.20 Some progress has been made since Harper's conclusion, that little was known about older people from minority ethnic groups, their use of services or their requirements ( see Introduction). We now have a body of research literature providing insight into the nature and causes of inequalities experienced by such groups. Most of the studies referred to are small-scale, based on Glasgow or Edinburgh and concerned with the Pakistani and Indian communities.
7.21 For professional practice, the research referred to in the review can be helpful in promoting a more person-centred approach generally. It is not necessary to commission research on the specific needs of every ethnic and national group resident in Scotland to find out that people with distinct languages and cultures require sensitive treatment involving people with knowledge and understanding of the language and culture. Nevertheless case studies of particular groups, if disseminated appropriately, can play a part in tackling ignorance and prejudice.
7.22 The scale of inequality is indicated by one comparative study (Bowes and MacDonald 2000) highlighting the low uptake of home care and aids and equipment amongst older South Asian people. Comparative research based on larger geographic areas including small towns and rural areas is needed so that progress in addressing inequalities can be tracked.
Exploring issues of equity and ageism
Key point 5 Social justice requires all older people to have similar access to basic health and social care whether they live at home or in a care home. There is some evidence that care home residents may be isolated from particular health and other services. More research is needed, based on large representative samples, to establish the extent of such inequity and to inform solutions. |
7.23 Given the priority afforded to social justice issues in Scotland, gathering evidence of inequality in access to services is an important function of research not wholly confined to research on cultural and ethnic groups. There is very little firm evidence but a widespread perception that older people in general are victims of ageism in the way services are organised and allocated.
7.24 Residents of care homes may be at risk of being cut off from access to community-based health care services such as chiropody, occupational and speech therapy, physiotherapy and dentistry. Research based on large, well-constructed and representative samples is needed to explore these issues thoroughly.
Analysing the effect of workforce issues on quality of care
Key point 6 The characteristics of the workforce who provide basic care is a neglected area in community care research. Improving quality depends on the recruitment and retention of staff who can be trained and motivated to provide person-centred care. There is currently very little evidence as to whether this can be achieved. |
7.25 The availability of trained and well-motivated carers to staff statutory and voluntary services and to act as volunteers is crucial for community care. The review by Jacques and Innes (1998) establishes the link between aspects of job satisfaction for care staff and quality of care for residents. However the current review identified virtually no published research since that review was completed which examines the impact of recruitment and retention of staff, characteristics of care staff, casual and short term employment on reliability and quality of care. Anecdotal evidence gathered by the author in the course of her own research suggests that the recruitment and management of casual staff in the voluntary sector absorbs disproportionate amounts of manager's time at the expense of time spent meeting with and reviewing the needs of clients.
7.26 High turnover of care staff in the statutory services and reliance on agency staff in care homes are also factors which might be expected to impact directly and indirectly on the quality of care. Issues of recruitment and retention of home care staff are the subject of a research report about to be published by the Welsh Office of Research and Development. This will be of interest in Scotland where such issues have yet to receive proper attention in the context of community care. An examination of recruitment and retention of professional social work and community nursing staff is also needed.
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