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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH
2. ASSESSING NEED IN THE COMMUNITY
2.1 This section looks at Scottish research concerned with need for and access to community care, from the perspectives of older people and carers. The first studies discussed explore older people's perspectives on, and experience of, community care services. Participants in these studies are potential as well as actual users of services. Studies relating to the needs of carers are included as is research on the particular needs and priorities of minority ethnic groups. Also included are studies which take a health promotion standpoint, relating the experience and priorities of local people to the overall goal of improving health and quality of life in the community. The final study discussed compares access to community care in urban and rural areas, basing its analysis on the perspectives of a wide range of provider organisations and carers.
2.2 Taken as a whole, the work described in this section goes some way towards meeting the need identified by Harper ( see Introduction) for research to help with understanding the personal strategies and decisions which influence people in their use of services.
OLDER PEOPLE'S PERSPECTIVES
Perceptions of needs and access to support
2.3 As long-stay NHS care contracted and increasing numbers of dependent older people are supported by community care Social Work Departments have increasingly targeted their services on the most dependent older people. The effect of targeting on the support available for the wider population of older people needing less intensive support services is illustrated by research on older people's perspectives on their needs and the availability of support (MacDonald 1999).
2.4 Using a combination of postal survey and in-depth interviewing, MacDonald's study estimates the level of self-perceived need for support in the urban population aged 75+ living in their own homes. A representative sample was drawn from GP lists in Glasgow and Edinburgh and a response rate of 65 per cent was achieved for the postal survey - giving a sample of 1022. About one third of respondents felt limited in their ability to perform everyday tasks and 28 per cent felt they lacked social contact. These proportions were significantly higher in the less affluent areas sampled. Although 30 per cent said they used home care or day care services, many of those who appeared to have the highest support needs were not among them.
2.5 A sub-sample of 79 respondents with identified support needs were interviewed. Findings suggested that chance played a large part in whether people received adequate support from primary health care and social services. Knowledge about social work services was very low amongst both clients and non-clients.
2.6 Local networks of community-based groups, neighbours and relatives played an important part both in providing support and in connecting people to statutory services. Older people whose first priority was to maintain their independence placed a high value on the Attendance Allowance (a non means-tested benefit), having a wide choice of social and transport facilities and having access to services such as physiotherapy and chiropody.
2.7 MacDonald's study draws attention to the gaps between on the one hand, agency's goals and intentions for delivering community care, and on the other, older people's personal goals for maintaining their quality of life. It concludes that more consistent and longer term funding for voluntary and community-based facilities, and more open access to advice about services are necessary to support independence and prevent crises which lead to dependence on intensive services.
2.8 A parallel study of South Asian older people (Bowes et al 2000) conducted immediately after MacDonald's study provided the opportunity for a comparative analysis of the perspectives of older people from majority (i.e. white) and minority (South Asian) ethnic groups. This analysis found that although the two groups had similar needs, their use of services, particularly home care and equipment and adaptations services was much lower in the South Asian sample (Bowes and MacDonald 2000). Other research relevant to the needs of minority ethnic groups is discussed later.
Health promotion
2.9 The Nuffield Centre for Community Care Studies at Glasgow University completed a study in 1998 of health promotion and community care which aimed to assess the potential for collaboration between agencies concerned with health promotion, including Health for All. community care and primary care, with the aim of improving health and well being. The barriers to improved quality of life experienced by service users and carers were explored; professional and policy makers discussed difficulties and opportunities for collaborative working. The researchers conducted focus groups and interviews with a range of stake holders including 6 groups of older people, one for each of the following groups: active residents of a northern island; Chinese people; frail care home residents; day centre members on low incomes; nursing home residents; and sheltered housing residents.
2.10 The study's findings are consistent with those of the MacDonald study. The older people in the Nuffield study viewed community care services very much in the context of their own efforts to be independent. For carers, quality of life was linked to both the demands of caring and the difficulties faced in dealing with other care providers. Users and carers could readily identify the kinds of action required to improve their quality of life - even small changes could bring large gains. But their experiences suggested that an understanding of the links between improving quality of life, achieving independence and integrating service delivery were largely missing at the level of policy within agencies. Without a stronger voice, users and carers felt that their needs could be ignored. The report puts forward recommendations for pursuing better quality of life for users and carers at strategic, operational, training and educational levels.
Assessing local needs
2.11 Rapid appraisal is the term used by Murray (1999) to describe a technique for incorporating lay perspectives into research and development, specifically in the assessment of local needs, in primary care research. The method of rapid appraisal involves local people in identifying local health needs and can have much in common with methods used in action research. Information about the neighbourhood is collected from interviews, observation and written sources and used to define local needs.
2.12 In Dumbiedykes, Edinburgh, Murray and other members of the primary care team carried out interviews to collect local information and views (Murray 1994). A joint action plan was then formulated between residents and local service providers. The top priorities for change which emerged in this plan were not related to the health service but to the bus service, play areas and shopping facilities. A health forum of residents and various professionals who worked in the area was set up and met regularly to pursue the joint action plan.
2.13 Rapid appraisal was judged to be an effective method of facilitating the meeting of local health needs. In subsequent studies it was found that rapid appraisal worked best in small homogeneous communities. It has also been found to be an effective training method both for induction of new members of the primary care team and as a method to teach "community diagnosis" to medical students (Murray 1999). Students were able to learn about and observe social and environmental factors which determine health.
CARERS' PERSPECTIVES
Support needs of unpaid carers
2.14 The breakdown of informal care is well established as being a critical factor in determining admission to institutional care. A high level of dependency in the person cared for, dementia severity, and care by a non-spouse have been cited as factors which can 'predict' institutionalisation (cited in McKee et al 1999). However, evidence from the Dundee Study of Carers and Dementia (McKee et al 1999) suggests that it is the impact of the dependency and dementia on the care giver and their willingness to continue caring which is the crucial factor rather than the characteristics of the cared for person.
2.15 The study examined factors associated with the maintenance and care of older people in the community and with the impact of dementia on family supporters. Two samples of 114 older people with a family carer were included in the study, one group with dementia the other without. Quantitative and qualitative analysis found that carers' willingness to continue caring was associated with self reported stress and with the way they felt about their relative's condition. Thus, carers who did not identify any problem with caring for their relative were more likely to continue caring than those who did. The feelings created by the problem (of caring) rather than the problem per se was what led to institutionalisation.
2.16 In discussing the implications for improving the well being of family carers, the Dundee study concluded that a focus on carers' responses to their situation would help more people to continue caring, provided that was their wish. These findings underline the importance of the separate assessment of carer's needs in efforts to avoid older people being admitted to care homes against their will.
Involving informal carers in care planning
2.17 Researchers based at Queen Margaret University College used research based methods to develop and validate "guidelines to facilitate the involvement of lay carers in the care planning of the person with dementia in hospital" (Walker et al 1999; Goulbourne et al 2000). The first stage investigated the issue of involvement in a unit providing day, respite and assessment for psycho geriatric patients within a hospital, with the aim of developing guidelines. The design of the study was intended to allow a deep exploration of barriers to involvement already familiar from research literature.
2.18 Participants in the study included 20 lay carers, 18 qualified and assistant nursing staff, other members of the multi disciplinary team including doctors, OTs and social workers. Data were gathered from a combination of interviews, focus groups, observation, field notes and formal documentation. The guidelines were based on a thematic analysis of these data.
2.19 Given the lack of any agreed set of principles or procedures for nursing staff to follow to ensure that carers had equal opportunities to be involved, involvement was found to depend on the assertiveness of carers themselves and the responsiveness of individual staff. There were four ways that carers could feel involved confirmed by the analysis: information being shared with them; being included in decision making; feeling able to contact someone when needed; feeling that the service responds to their needs. The guidelines were drawn up to help staff work towards fulfilling these objectives (Walker et al 1999).
2.20 The guidelines produced were validated by a group of carers in a follow-up exercise. Fifteen carers contributed their views in two separate workshops and a further 4 responded in writing. The guidelines were tested to see if they differentiated sufficiently between carers' differing circumstances. Carers in community settings stressed the key role of the GP and the need for several key contacts to help with the multitude of needs. The carers found the guidelines relevant to their situation and felt they would be helpful. However they acknowledged the practical difficulties of implementing them, as did the 8 professional workers who attended a dissemination workshop. Amongst their recommendations the researchers call for further dissemination of the guidelines and validation with other client groups and health and social care professionals (Goulbourne et al 2000).
2.21 The needs of black and minority ethnic carers of older people and barriers to service provision are the subject of a study by Netto (2001). A sample of 45 carers in Lothian were involved in interviews and focus groups. They included one third of Chinese origin, one third Pakistani and the remainder from a range of origins including Afro-Caribbean. Particularly striking are findings about the lack of suitable respite services, the lack of information and interpreting services and lack of benefits advice.
MINORITY ETHNIC GROUPS
2.22 In 2001 the Scottish Executive published an audit of research on minority ethnic issues in Scotland (Netto et al 2001). Section four of the report, concerned with 'Race and Social Care', provides a wealth of information drawn from studies of the experiences of particular groups of minority ethnic people, of social work policy and practices, and of the need for culturally sensitive services. Emerging themes from studies involving older people include: high levels of unmet and hidden need; low levels of knowledge of existing services; difficulties in accessing services; low use of home support services; and lack of cultural sensitivity in service provision.
2.23 Cultural and demographic change within communities gives rise to new issues for older people. A study of the Jewish community emphasised the importance of planning services which take account of the cultural and religious needs of an ageing community who were increasingly living apart from their family (Samuel and Pearson 1999, cited in Netto et al 2001).
2.24 The audit concludes that studies are almost exclusively local or regional in coverage and conducted in the main in Edinburgh or Glasgow. Studies have focused on the Pakistani or South Asian communities with the result that little is known about older people of Chinese, Afro-Caribbean or other origin. A number of gaps in research are identified: the needs and experiences of older people in residential care; studies which explore and evaluate how the design of existing services can be adapted to take account of particular cultural needs; and studies of the experiences of disabled people in minority ethnic groups.
2.25 In general, research in this area presents evidence of the diversity of minority ethnic groups whilst reporting on their common experience of racial harassment and discrimination in Scotland, and a sense of exclusion from mainstream services (Netto et al 2001).
2.26 Bowes and Dar (2000) in a study which employed parallel methods to that of MacDonald (1999) discussed earlier, interviewed 102 South Asian older people about their experiences of seeking and finding care and support. In-depth follow up interviews were conducted with a sub-sample of 30 older people and with 10 family carers. The researchers found that housing problems were very common, people did not have adaptations or equipment to aid mobility and applications for rehousing had been unsuccessful. Specialist day care services provided for their ethnic communities were virtually the only social service used by participants. Although these services were valued, referral systems from community groups and from primary care to social work departments were particularly ineffective for minority ethnic older people, resulting in unmet need for home care, adaptations and equipment.
2.27 Bowes and Dar's findings echo a common theme which Netto et al (2001) found in a range of studies about minority ethnic groups' access to specific health services. Services evaluated included several of particular importance for older people: an arthritis project (Munro, 1996, 1999); podiatry services (Ahmed et al, 1995); and respite services for carers of older people (Netto, 1998). Lack of knowledge of services and of screening procedures, difficulty in communicating with GPs and greater inhibition about discussing certain aspects of health are all identified as contributing to lower referral rates and inadequate health care as a result. Particular issues for people from minority ethnic groups who have dementia are discussed later in Part 6.
COMPARING URBAN AND RURAL COMMUNITY CARE NETWORKS
2.28 Milligan's (2001) research is concerned with care networks and how they are differentially influenced in rural and urban areas by government restructuring. The conceptual framework for her research, described in some detail, has very immediate relevance to the issues of policy implementation faced in community care.
2.29 Between the 'micro-level' of the individual exchange between carer and service user and the 'macro-level' of national legislation and policy guidance there exist various agencies which translate policy into a social programme at the 'meso' or local level. The framework is represented as a network in which local structures and institutional practices, together with the everyday routines of experienced practitioners in statutory, private, voluntary and informal sectors, are activated to produce community care outcomes.
2.30 The value of this conceptual framework was explored by Milligan in a study carried out in Dumfries and Galloway and in Glasgow in 1996-1998 in which she examines the experiences of providers of care to frail older people and how they can influence and be influenced by the physical and social environment in which change occurs. The Community Care Act and the restructuring of local government were identified as the macro-level changes taking effect at that time.
2.31 The study employs a longitudinal in-depth approach suited to the aim of observing interactions and the effects of change. Research methods included: a postal survey of voluntary sector organisations followed by serial interviewing of a sample of respondents (12 in Dumfries and Galloway and 28 in Glasgow); focus groups with informal carers followed by serial interviewing and diary keeping with a sample of 12; a postal survey of private sector providers; and in-depth interviews with key people in statutory health, social work and housing agencies.
2.32 The findings of the research draw attention to specific aspects of rural disadvantage which have a direct impact on the range and quality of services available.
- Urban areas experience economies of scale in service delivery because of the larger concentrations both of people and of deprivation. Transport costs are higher in rural areas but the scarcity of transport also reduces access and choice.
- Methods of allocating government funding mean that relatively small pockets of deprivation - and the higher costs of service delivery - are overlooked. This was found to have a disproportionate impact on funds available for the voluntary sector in rural areas. Fewer voluntary organisations operating in Dumfries and Galloway compared with Glasgow means increased reliance on informal care.
- Access to Urban Programme funding provides opportunities to develop innovative and flexible services independently of the local authority.
- The more dispersed and ageing population in rural areas means a restricted supply of volunteers and informal carers.
2.33 The strength of the network and its ability to support older people was also affected by political and ideological differences at local government level and by whether or not local authority and NHS Board boundaries were coterminous. In Dumfries and Galloway, coterminosity facilitated joint planning and working (Milligan 2001).
SUMMARY
2.34 Two distinct themes emerge from the research discussed in this section. The first theme, emerging from research by MacDonald (1999) and Nuffield (1998), concerns the gap between the support people actually need and what is on offer. Needs in terms of people's own quality of life and expectations may be quite different from needs as catered for by health and social care agencies. Other agencies, and communities themselves, have a role to play. Gaps in community care identified can often be traced to agencies not operating as a network of support and not referring people on.
2.35 Netto et al's (2001) audit of research on minority ethnic groups reinforces this general point. It provides some evidence that older people in minority ethnic groups have poorer access to community care services than others and highlights particular ways in which community care services need to adapt to achieve more equal access.
2.36 Milligan's (2001) comparison of urban and rural networks is particularly helpful in uncovering the social and institutional mechanisms which determine the way local networks operate. At a more individual level, the Dundee carer study draws attention to the importance of individual assessment of carers' needs as a way of strengthening community supports.
2.37 The second theme of involving people in service development is illustrated in very different ways in two of the studies discussed. In the Dumbiedykes study (Murray 1999) research contributed to a local needs assessment which led to local improvements in services in tune with the priorities of local people. In the carer guidelines research (Walker et al 1999) the outcome was a direct contribution to professional practice.
2.38 This theme of involving service users and carers in research in order to achieve practical outcomes is a recurring one for this review and is discussed in the concluding section of the report.
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