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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH

4 SUPPORT AT HOME

4.1 This section brings together research on services delivered to people in their own homes. The studies of home care examine the range and quality of services and also the viability of intensive home care packages as an alternative to care home admission. Very few studies were identified which examined specialist services or innovative approaches to support at home. The exception was in the field of telecare - the application of smart technology in individual homes - where innovation in practice has attracted research interest.

HOME CARE

Quality of care - service user perspectives

4.2 Service user criteria for good quality home care have been well established by research. They include: reliability, continuity, care worker attitudes and competence, responsiveness of service, basing care around the needs of the service user. These qualities are confirmed both by Qureshi and Henwood (2000) from research on older people's perspectives of outcomes, and by Raynes et al (2001) from a random sample survey of social services home care clients in Manchester. As Raynes observes in relation to recent debates about the definition of personal care: "The current emphasis on the provision of personal social care in home care services needs to be balanced by addressing the characteristics of quality home care services as defined by older people" (Raynes et al 2001).

4.3 Scottish research commissioned for the Scottish Executive Care Development Group in 2001 found that older people's views about service provision were consistent with the model of quality identified in the English studies referred to above. This focus group study examined the attitudes of 49 older people to the issues surrounding free personal care. All of the participants used health and social care services and almost half were care home residents. The researchers found that on the whole participants were able to talk about their own experience of services and could identify their own unmet needs and gaps in services. Few were able to generalise about these matters or express opinions on issues such as 'who should pay for care' in the one hour allotted for the focus group discussion (Dewar et al 2001).

4.4 The researchers concluded that it made little sense to participants to prioritise services that they regarded as essential to their well being. The question as to which services should be provided free was therefore perceived to be irrelevant by participants. Categorising needs in terms of nursing care, personal care or living care, and defining needs in terms of specific tasks to be carried out by particular group of workers, the researchers argue, runs counter to the philosophy of care which places the user perspective at the heart of service delivery. The ability of individuals to articulate their own needs is the key to realising this philosophy and therefore the development of new methods to elicit users' views should be a priority in the drive towards better quality services (Dewar et al 2001).

4.5 Current research at York University ⁴, part of the Department of Health Outcomes Programme 2001-2005, is investigating what methods, management and resources make for flexible person-centred home care for older people. It aims to make practical recommendations about teamwork models, purchasing arrangements and resources which enable home care to respond flexibly, yet within realistic resources, to "heartfelt personal priorities" expressed by older people for whom they care. The literature review ⁵ (Patmore 2002) provides a valuable source of UK and international material about models of home care provision.

Audit of home care

4.6 The Accounts Commission for Scotland study of home care (2001) is a rich source of information about the quality of home care from a range of perspectives. Services for older people in 6 local authorities were examined with respect to the range of services, costs, quality, and users' and carers' views. The study team worked with 6 volunteer councils who were conducting Best Value reviews of their home care services. Information was collected in a range of ways: postal surveys of service users, carers, staff and care managers; focus groups for users and carers; interviews with staff. Responses were received from 885 users (45 per cent) from an initial sample of 1950 users. From a potential 584 carers associated with those users in the sample who said they had a carer, 529 carers responded.

4.7 The lack of robust management information to support the delivery of home care in some of the local authorities participating hampered the development of performance indicators - one of the study objectives - and is presented as a key finding of the study.

4.8 The evidence collected in this study was examined in the context of five key areas of policy interest, the first three of which are of particular relevance to this review:

• achieving the right balance of care, examining whether there has been a shift towards the provision of care at home;
• whether a quality home care service is being delivered, including examples of quality measures;
• joint working;
• the management of home care service, and how information is used to support the delivery and development of the service;
• costs of providing home care and charging policies.

4.9 Analysis of Scottish Community Care Statistics by both the Accounts Commission (2001) and by Laing and Buisson (2002) concludes that the fall in numbers of home care clients since 1998 and the upward trend in the numbers receiving more than 10 hours of care per week is attributable to greater targeting and stricter eligibility criteria for home care services at the expense of less intensive practical help. However, the Accounts Commission detected a real reduction of 11 per cent in the number of home care hours employed by councils in the five years from 1996 to 2000. This suggests that overall, service reductions for less dependent people have not been matched by increases for more dependent people.

4.10 Home care was rated as good all of the time by 77 per cent of service users in the Accounts Commission survey - the remainder rated it as good some of the time - and by "almost two thirds" of the carers. Interestingly, home care workers surveyed were less likely than users and carers to rate the service highly - only 55 per cent on average did so. Between 40 per cent and 70 per cent rated it as good or very good in meeting older people's needs, showing considerable variation between councils (p13).

4.11 Involvement of service users in the assessment and review processes was found to need improvement. 40 per cent of service users had not discussed their needs with someone from the council for a year or more and only 15 per cent of carers had been asked if they needed support. Although it was apparent that formal reviews were not taking place as regularly as is desired, most home care workers (86 per cent) said they played a role in keeping managers informed about the changing needs of their clients. All the more surprising then that 69 per cent of home care workers said they were never involved in formal reviews (p 16).

4.12 A significant minority of service users said they did not have a choice in the day or the time when their home care service was provided. Choice in what home care tasks were carried out was more widespread though not universal (pp18-19).

4.13 In spite of the emphasis on personal care and accompanying changes in home care eligibility criteria introduced in recent years, the Accounts Commission survey found that 33 per cent of service users had help with housework. The importance of practical domestic help was reinforced by the kinds of tasks which service users would have liked more help with. The most commonly mentioned were cleaning windows, heavy housework and hanging curtains (p27).

4.14 Research has consistently shown a very high level of user satisfaction with the home care service in terms of how the worker treats them personally, and this survey was no exception. Dissatisfaction with home care can arise over arrangements for temporary cover. In this survey, 41 per cent of service users were always satisfied with the service they received when their usual care worker was not available and 46 per cent said they were usually satisfied (p22).

4.15 An important feature of the Accounts Commission results is the wide variation in levels of satisfaction with services between the respondents in different councils. This variation was also apparent in views about written information from Councils about the services and in knowledge about how to complain. It would be interesting to explore whether variations in supply factors such as staff training and turnover, and levels of sickness absence are associated with variations in satisfaction with different levels of service. This study did not attempt to account for these variations, and even if it had intended to it would have required more complete and consistent management information than appeared to have been available at the time.

4.16 The evidence on joint working presented in the Accounts Commission report is mainly in the form of examples of good practice. These include: shared electronic records; and specialist teams in which home care workers complement skilled nursing care to provide alternatives to hospital or residential care. The survey also reported a low incidence of sharing of care plan information: only 16 per cent of service users and around 50 per cent of home care workers had seen relevant care plans. Home care workers were even less likely to have seen a risk assessment for their clients.

4.17 The perspectives of home care workers (and of care home staff - see part 5) have tended to be neglected in research on quality of care. Recent research in Wales (awaiting publication by the Wales Office of Research and Development) has examined the factors contributing to problems of recruiting and retaining home care workers. The research aims to support planning and policy making in dealing with the twin pressures of the anticipated increase in demand for home care and the need for home care services to meet national standards.

INTENSIVE DOMICILIARY CARE

4.18 The research literature on the development of intensive domiciliary care is reviewed in Curtice et al (2002, p 15-21). This review identifies ample evidence that flexibility in service delivery is a necessary condition for providing for people's needs at home. Outside purpose-designed demonstration projects, this flexibility has been found to be difficult to achieve in the public sector because of the nature of existing employment contracts and the high costs of paying for care outside normal contract hours. The use of private agencies and the introduction of new job descriptions and designations for staff have played a part in increasing the capacity of councils to provide flexible care packages although in Scotland the process has been slower than in the rest of the UK (Curtice et al 1997).

4.19 Augmented Home Care schemes in Ayrshire and West Dunbartonshire were evaluated by Curtice (cited in Curtice et al 2002). Results highlighted the importance and the high cost of nursing input.

4.20 There is an extensive UK research literature, much of it associated with the Personal Social Services Research Unit (PSSRU) (reviewed in Curtice et al 2002), which analyses the costs, effectiveness and outcomes of home care packages. Research conducted by PSSRU in the mid 1990s (the ECCEP study - see part 3) involving 12 English local authorities, replicated earlier research (the Domiciliary Care Project) to allow comparison of findings and identification of progress. Amongst the conclusions, the ECCEP study found that one year after referral for a new or revised care package, the vast majority service users remained in the community. In addition there was evidence that the new community care arrangements had lead to greater emphasis on targeting, tasks, flexibility and indicators of quality (Bauld et al 2000, p368).

4.21 A study conducted by the Nuffield Centre for Community Care Studies (Glasgow University) explored the use of intensive domiciliary care across Scotland and its viability from the perspectives of service users, carers and staff (Curtice et al 2002). The study was conducted in Aberdeen, Edinburgh and South Lanarkshire in 1998-2000. Intensive support was defined as either 25 or more hours per week, 3 or more home care visits per day, or day care coupled with home care visits. The interview sample was made up of 150 older people who either had been assessed as being 'at risk' of care home admission or who were receiving intensive support. In 63 cases an informal carer was also interviewed. After nine months, 92 of the original sample of older people and 31 of their carers were interviewed again.

4.22 Qualitative analysis of interviews with service users and carers revealed that satisfaction of service users and carers with services was qualified - there was some dissatisfaction with the high number of care workers involved and with the reliability of staff cover arrangements. The most significant weakness in the service appeared to be the lack of proper care management and monitoring arrangements: respondents often felt that they were responsible for coordinating their own care packages. Inflexibility continues to present an obstacle in achieving satisfactory outcomes for people being supported at home. Factors which limit the viability of intensive domiciliary care and 'critical supports' which can overcome them are summarised in the following four scenarios:

• the best outcomes for service users and informal carers are achieved when decisions are needs-led and systems are integrated with shared goals;
• when decisions are needs-led but systems are fragmented, users and carers find themselves having to take on more of the care management role than they would choose, the quality and reliability of services is not guaranteed;
• funding-led decisions within an integrated system of care management and service delivery provide reliable services but are more focused on risk and dependency than on needs and preferences - there is an assumption that informal carers will fill the gap if the person's needs increase;
• the worst outcomes and least viable care packages are the result of funding-led decisions within a fragmented system - care managers have limited discretion and users and carers feel they are fighting for services - benefits of domiciliary over institutional care are reduced.

4.23 The Nuffield study included a comparison between the sample of people being supported at home with intensive care packages and a sample of 63 people who had recently been admitted to a care home. Only 12 of the 63 in the care home resident sample had received care packages prior to admission which met the study criteria for intensive support. 44 said they had not been offered additional help prior to admission. Only a minority (21 per cent) had made a positive choice to enter residential care. The majority appeared to have moved into care reluctantly and in the belief that there was no other option available. In contrast, 60 per cent of the community-based sample were still living at home nine months after first being interviewed - a somewhat lower proportion than was found in the comparable sample in the ECCEP study. The researchers conclude that intensive support is sustainable but that there is no evidence of a continuum of support whereby older people are offered appropriate choices as their support needs increase.

Palliative care

4.24 The role of community nursing in the provision of community care is touched on in a survey of palliative care provided in the primary and community care settings in Forth Valley. The survey found that in a 3 month period (1/1/1996 - 31/3/1996) district nurses were involved in the palliative care of 524 patients of which half were cancer cases. The majority of patients were aged over 65. A parallel survey of GPs indicated an annual total of around 600 receiving palliative care in the community. Nurses reported a higher proportion of non-malignant disease in their caseloads than did GPs. The report of the survey is not explicit about the content of the palliative care provided. However we can infer some of this from the perceived training needs indicated by nurses, including symptom control and development of counselling and bereavement skills (Hunter et al 1998; Dyer et al 1998).

EQUIPMENT AND ADAPTATIONS

4.25 A sample survey of waiting times for equipment and adaptations in 2000 collected detailed information from all 32 councils in Scotland (Hall 2001). The survey reported on the variability of waiting times both between and within local authorities and on the processes employed in delivering the service. Good practice, particularly involving joint working, is highlighted in the report and linked to good outcomes in terms of waiting times. Service users and unpaid carers did not participate in the research and therefore 'satisfaction' is not measured directly in the study. Unfortunately it proved impossible to collect sufficient consistent data across all local authorities to provide a Scotland-wide analysis of waiting times - the difficulty of collecting data about service provision across local authorities is a recurring one. The analysis therefore relies on case studies to draw the conclusion that 'sophisticated' joint working arrangements, i.e. systems which go beyond simple joint equipment stores, are beneficial in reducing waiting times and waiting lists.

HOUSING AND SUPPORT

4.26 The Supporting People initiative to improve choice in housing and support had a long gestation period prior to its implementation in April 2003. Nevertheless there appears to be very little Scottish baseline research published to assist with assessing the impact of the initiative in the future. A study involving 11 cases drawn from 5 local authorities was published by Communities Scotland in 2003 (Craigforth 2003). This study was designed to provide a snapshot of housing and support options for people with particular needs before the measures of the Supporting People initiative had any impact. The report covers the relevant issues and proposes greater availability of specific practices to improve choice: independent advocacy, home ownership options, direct payments; early dialogue about housing and support preferences; and better information. However the study is too small to facilitate monitoring of the impact of Supporting People.

4.27 An evaluation of very sheltered housing in Tayside (Communities Scotland 2001) found that assessment of health and social care needs did not typically take full account of housing needs and that this could lead to existing provision being under used.

4.28 The development of new housing solutions for people who become dependent on support has been a neglected area in Scotland and the UK. In some countries, notably Denmark and the Netherlands, innovative small scale housing has been developed as alternatives to institutional forms of residential and nursing care. A new 2 year study of housing and care models commissioned by the Joseph Rowntree Foundation will compare and contrast a range of new housing models for later life ⁶. This study will cover the UK as a whole in mapping the range and number of innovative schemes. It will also review international literature relating to the strengths and weaknesses of different models of housing with care and support in a report due for completion in late 2004.

4.29 Exploring yet another aspect of dementia care ( see part 7), research reviewed in Day et al (2000) has shown that the design of the physical environment can play a positive role in the care of people with dementia.

TELECARE

4.30 The use of smart technology to help maintain people in their own homes is currently being pioneered in a number of local authorities in Scotland. West Lothian's project is on a large scale with the introduction of telecare timed to coincide with the closure of some residential homes for older people. South Ayrshire's project highlights the benefits of 'passive detectors' for reducing risks for people with dementia who are living independently. Stirling University has been involved in evaluating projects in both local authorities and is currently conducting a longitudinal evaluation of the smart housing and telecare community care provision in West Lothian - to be completed in 2005 ⁷.

4.31 The Stirling team have evaluated a pilot project (Home Comforts) which provided smart home technologies for 22 people in South Ayrshire (Bowes and McColgan 2003). Using qualitative research methods involving 8 service users, 6 carers and 12 staff, the researchers found that the use of smart technology had some positive effects. Comparison of care packages received over a 6 months period by 'Home Comforts' clients with those received by a comparator group showed that the hours of home care were more likely to have increased for the comparator group, that admissions to care homes and hospital were more likely and that GP visits were more frequent than for the group with the smart technology installed in their homes. These differences meant that the overall cost of care tended to be lower for the smart technology group.

4.32 The pilot phase of the West Lothian research (Bowes and McColgan 2002) follows on from earlier research conducted by Dundee University, which focused on users' and carers' perspectives (Gillies 2001). Gillies interviewed 21 of the first group of clients to receive smart technology installations at home in West Lothian, 5 home support staff and nine unpaid carers. Interviews with the clients covered the process of installation of the technology, people's knowledge and understanding of it, and their future aspirations. Staff were interviewed about their work and their aspirations for themselves and for the smart technology project. Carers were asked about the effects of the technology on the clients and on their own care work, as well as being invited to comment more generally on the technology.

4.33 Key findings of Gillies' work (2001) were that the project had achieved a range of successful outcomes. Many clients had continued to live in their own homes. They had generally become accustomed to the technology and appreciated its benefits. Difficulties with the technology were minor and generally practical. Carers were also satisfied with the technology, though it was not clear that their care work had reduced, or that they were necessarily willing to reduce it. The staff were proud of the achievements of the project, and appeared to be coping well with change and uncertainty at the time of interview.

4.34 Bowes and McColgan's results from interviews with 14 staff, 12 clients and 3 carers in West Lothian were similar to Gillies' (Bowes and McColgan 2002). They also found some evidence that the technology could be intrusive for clients and a cause of anxiety when things went wrong.

4.35 The full evaluation ( see footnote 7) will explore the experiences and perceptions of the stakeholders in these programmes i.e. older people, unpaid carers and staff. Methods will include: case studies involving service users and informal carers; interviews with staff from a range of agencies; a value for money study; and comparison of the initiative with other models of care, using statistical measures and matched controls in another authority offering more traditional services.

4.36 Developing research methods for the full scale evaluation was a major aim of Bowes and McColgan's pilot study and the instruments published with the report are a potential resource for evaluation of telecare in other local authorities.

SUMMARY

4.37 Research on community-based services demonstrates the centrality of users' perspectives in achieving good quality services. As Dewar et al (2001) point out, people's judgements about specific services are directly related to the effect of the service on the quality of their lives as a whole.

4.38 Evidence from research and audit indicates that overall in Scotland there has been a reduction in total home care provision at the expense of people with low level support needs.

4.39 Wide variation in satisfaction with services both from service users and home care workers is revealed (Accounts Commission 2001) but there is a lack of research on what contributes to this variation. The effect of factors such as management practices, service models, labour supply and training on quality as perceived by service users could usefully be explored.

4.40 One source of service user and carer dissatisfaction, noted in both the Accounts Commission and the Nuffield studies, is the limited use of care management to monitor and review needs once services have been allocated. In about half of cases surveyed by the Accounts Commission, home care workers were not involved in reviews.

4.41 The national survey of waiting times for adaptations and equipment identified an association between sophisticated joint arrangements and lower waiting times. However there is a lack of published research examining joint services and the lessons to be learned from different models of integration.

4.42 The studies of community-based palliative care focus on the input of nurses and medical staff and tell us that a high proportion of palliative patients in Forth Valley are older people with diagnoses other than cancer.

4.43 There is little research which examines the role of housing and support in community care networks. However, innovation in housing and support through the use of telecare has created a new area of interest for researchers. Ongoing evaluation of telecare projects is identifying a generally positive response for staff and service users. The Stirling University research is also focusing on developing evaluation tools which have potential for wider use beyond their own project.

4.44 A continuing theme is the problem of poor or inconsistent management information. This compounds the inevitable difficulties for researchers produced by local authorities employing different service configurations and different interpretations of national policy and guidance in their areas.

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