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Chapter Seven Experiences and Views of Service Users
7.1 In this chapter, we explore the research record on the experiences of service users and informal carers. Our key focus is the policy of free personal care. However, it is unusual for researchers as well as older people themselves to single out personal care for separate consideration, and we therefore include reference to work which takes a more holistic view. This holds lessons for future research considering services users and others' views and experiences of free personal care.
The importance of service users' views
7.2 Our first point concerns approaches to research of this kind, and its potential contribution to service development. There is a considerable body of research both in Scotland and across the UK on clients' experiences of long term care services, and scope for methodological development. MacDonald's (2004) review of older people's views about and experiences of community care is useful here. She notes that the Research Governance framework requires service users to be involved in research not simply as "subjects" but as active participants, acting, for example, in an advisory capacity. There are some recent particularly interesting pieces of research in which older people have been involved in a much more direct way, acting as researchers ( e.g. Clough et al. 2006).
7.3 MacDonald (2004: 47) recommends that such participatory and collaborative methods, along with a focus on action research have the potential to produce results which effectively tap into service user views and experiences. They are also in tune with wider policy requirements for consultation - though they may challenge some of the existing ways of conducting this through, for example, internet use and public meetings which may prove difficult for older people to attend. MacDonald cites Wilkinson's (2002) volume of edited work on researching with people with dementia as exemplary in developing innovative ways of ascertaining the views and experience of frail older people in general. Other relevant work includes Law and Janzon's (2004) review for SCIE of involving older service users in service development and Andrews, Manthorpe and Watson's (2004) discussion of intermediate care. Citing Crawford et al. (2002), they argue that involvement of this kind can improve the quality of services, both in terms of design and of delivery. Client consultation is a central element of Scottish policy on service improvement, and this research therefore offers useful lessons.
Perspectives on personal care
7.4 Research specifically focused on the free personal care policy is limited. Bell and Bowes (2006) explored the experiences and views of older people about the free personal care policy in 2005, three years after implementation. Their findings were in many ways rather similar to those of Dewar, O'May and Walker (2001, 2003a, 2003b) who conducted similar work prior to the introduction of the policy. Two points emerged especially strongly from both studies. Firstly, the researchers found that older people wanted to talk about service quality, and were clear that they wanted flexible, accessible services, which supported their independence and choice. Secondly, it was clear from both projects that older people themselves and informal carers (included in the Bell and Bowes study) perceive their care needs and services received holistically. They do not distinguish personal care from other kinds of care, including those which currently come into the "non-personal care" and "housing support" categories. Regarding free personal care specifically, Bell and Bowes (2006) found considerable confusion about the whole system of support and care for older people, including personal care.
7.5 Tester et al.'s (2004) recent study under the ESRC Growing Older programme examines the views of some of the frailest older people, living in care homes, including people with communication difficulties. The communication tool Talking Mats™ (Murphy 2003) was used with ten of these respondents, and proved very effective. The key findings of this study are that lack of privacy and choice in some care homes regimes negatively affect self esteem and sense of identity; that lack of control of one's own life, which can arise from rigid routines in care homes is detrimental to well-being and quality of life; and that social interaction and social relationships of choice were important for people's enjoyment of life. One aspect of personal care particularly highlighted in the study was the need for people to be able to visit the toilet when they needed and wanted to do so - respondents were particularly distressed where this was not well managed in their care home. Data such as these emphasise and highlight the key concerns of clients in care homes, and refer to quality of provision - as we have noted, this is uppermost in older people's comments when they discuss services. Notably, being able to visit the toilet is linked with self esteem, dignity, choice and quality of life, and was not reduced by these respondents to an item on a list of personal care needs.
7.6 There is a range of other work specifically concerning aspects of long term care, which mainly uses qualitative methods. Davies and Nolan (2003) for example considered in detail the experiences of informal carers when their relative was admitted into residential care. By conducting this kind of microscopic work, they were able to identify precisely ways in which professionals and other staff could support the process more effectively. Similarly, close consideration of the views and experiences of older people with visual impairments revealed particular ways in which services could be improved, including improved quality of care, better follow-up services and a need to promote registration of visual impairment (Percival 2003). Mozley et al.'s (2004) extensive study of the views of older people in care homes explored many aspects of their lives, using structured research instruments. However, this work tends not to focus clearly on aspects of personal care, indicating a gap in research.
Quality of life
7.7 Recent research on older people's views about services (and indeed about their lives in general) has focused on new thinking about quality of life. The ESRC-funded Growing Older programme of research has produced a significant body of new research. Examining older people's own views about their quality of life, Bowling et al.'s (2003) key study surveyed a random sample of 999 older people using a section of the ONS 'Omnibus' Survey. Key findings of this work relevant to the consideration of personal care are that quality of life is perceived holistically by older people, as the Scottish work also showed. The most highly valued aspects are good health and good social relationships. Bowling et al. (2003) are critical of approaches to surveying quality of life which are narrowly focussed and, particularly, of studies centred on service provision.
Paying for care
7.8 Views about money and paying for services are relevant to the discussion of the free personal care policy. The policy itself has wide support, as we have previously described. Researchers have explored issues of paying for services in more depth. For example, Hancock et al. (2004) explored the extent of lack of take-up of means-tested benefits following the introduction of pension credit. Using the Family Resources Survey data on take-up of income support, she found that people with high entitlements were likely to apply for benefits, but that 36% of those entitled did not make claims. She suggested that this might result from difficulties in the process of claiming or from stigma attached to receipt of benefits, especially income support. Hancock's work is important for its reminder that people with entitlements and needs do not necessarily take up the benefits to which they are entitled. Bell and Bowes' (2006) research included evidence of negative views about means testing, supporting other work such as Deeming and Keen's (2003) survey which demonstrated significant negativity towards means testing in England. Free personal care has removed one element of means testing, but older people in Scotland may still face this procedure for other benefits or services.
7.9 In terms of the use of personal resources to pay for long term care however, there is some evidence of changing attitudes. Recent research by the JRF on attitudes to inheritance (Rowlingson and McKay 2005) found that whilst many older people who had particularly housing assets felt they wanted to leave an inheritance, only a minority were sacrificing their current enjoyment of life to do so. Older people were content to use their assets to improve their own lives. However, the study does not suggest that people see long term care as a priority - generally, resources were being used to pay household bills, property repairs and so on, to maintain people's basic standard of living.
7.10 One recent policy innovation which raises issues in terms of service user experiences is Direct Payments. We have already discussed the policy itself elsewhere in the report (Chapter 2). Here, it is worth noting some aspects of user views relevant to its implementation. If older people are granted Direct Payments - to which they are entitled in Scotland, despite low numbers currently in receipt - then they may be purchasing personal care for themselves. Riddell et al. (2005) note that Scotland has a particularly poor record in the granting of Direct Payments to older people in comparison with the rest of the UK where take up by older people of these is in any case limited.
7.11 In some respects, it can (and has been) argued that Direct Payments confer control over services for the user, permitting the exercise of choice and supporting independence. However, there is a debate in the literature about the appropriateness of Direct Payments for achieving these goals for older people. For example, Clark and Spafford's (2002) research with care managers highlighted tensions between empowering older people and protecting them from potential exploitation by the unscrupulous sale of services, and worries about the extent to which releasing potentially large numbers of people from current arrangements could threaten the integrity of existing services, and therefore compromise service quality for those who did not choose Direct Payments. A number of key questions arise concerning the availability and quality of services which may thus be purchased, as well as the adequacy of any allowances for meeting market prices for services. In the light of such questions, Pijl (2000) has argued that allowances of this kind may not be appropriate for many.
Varying perspectives
7.12 There is variation between experiences of service use on the basis of ethnicity, rural and urban settings (Innes et al. 2005) and in terms of social class. Particular issues continue to arise for BME older people seeking care and support services. Bell and Bowes (2006) in accordance with previous work in Scotland (reviewed by Netto et al. 2001 at length) and the UK (see Butt and O'Neil 2004) found that access was restricted, as services were perceived as inappropriate. One result of this in Scotland is pressure on the BME voluntary sector which, as we indicate earlier is restricted in the types of care and support it can supply. Personal care is a particularly sensitive issue for some BME communities because of gender issues, and Bell and Bowes (2006) found some indications that people were buying personal care services privately, believing that the statutory free service would not be culturally competent. Similar issues emerge in wider literature, such as Fitzpatrick, Mold and Roberts' (2005) extensive literature review concerning care home provision for BME older people, which identified consistent references to shortfalls in service access in terms of failures of cultural competence.
7.13 Whilst there has been a significant body of work relating to BME groups, there has been far less consideration of experiences and attitudes in rural areas, where service providers also face issues of delivering services to dispersed populations or research which has focused on social class variations in attitudes and experiences. Innes et al.'s (2005) and Philip et al.'s (2003) studies both suggest particular difficulties for older people in rural areas in terms of choice - service provision is limited in range - and accessibility, due to distances and transport issues (see also Gilhooly et al. 2003).
7.14 Bramley, Lancaster and Gordon's (2000) work on poverty in Scotland using the Scottish House Condition Survey ( SHCS) illustrates some distinctive aspects of poorer older people's experiences as compared with the general poor population. They find that older people are more likely to fail to take up benefits to which they are entitled. In general, poverty is worse in the West of Scotland and other areas of industrial decline (in which the older population includes people who have directly experienced such decline). Both these factors are important in decisions about targeting resources for long term care of older people. Abbott and Sapsford's (2005) work in Middlesbrough supports arguments for a more careful focus on poverty and deprivation, identifying key contrasts in experiences between poorer and more affluent neighbourhoods
7.15 As new generations age, there is evidence that their expectations of services are changing, and there is less acceptance of existing standards. In Donelan et al.'s (2000) international comparative study of older people's satisfaction with health services, UK respondents appeared relatively well satisfied compared with others, but there were indications that services were not perceived to be improving, despite the history of innovation and attempts to raise standards we discussed earlier. Dewar, O'May and Walker's (2001, 2003a, 2003b) work in Scotland, which had a particular focus on personal care, suggested that older people did perceive a decline in services in recent years, and that they wanted more continuity, flexibility and choice, better information about services and more involvement of Allied Health Professionals, including physiotherapists and occupational therapists in their care. Similarly, Bell and Bowes' (2006) more recent work identified perceptions of decline in service adequacy.
7.16 Informal carers' views are also important. In our discussions of demographics and the balance of care, we noted the vital importance of this group to current and future provision of care for older people. There is a longstanding research record on the qualitative aspects of informal carers' tasks, experiences and views, and it is clear that many are significantly involved in providing personal care. There is however little specific research focusing on older people and informal carers' views about personal care per se. Some indicative material is found in the work of Bauld et al. (2000) who look in detail at particular tasks of informal carers looking after older people in the community. Their study, which included over 200 informal carers, many of whom were interviewed twice over time, demonstrated that a majority of carers looking after someone with high needs and cognitive impairment were carrying out personal care tasks. Co-resident carers were far more likely to be doing these tasks than others. They note that there is a significant record of research demonstrating that older people generally prefer only the closest of relatives to complete these tasks, with formal care workers as the alternative, suggesting again particular sensitivities in personal care. Like others however, the study does not explore attitudes to personal care tasks in any detail, focusing instead on the whole range of care tasks.
7.17 One other study which highlights sensitivity in relation to informal care is that of Gott et al. (2004), who, in considering choices people might make at the end of life, found that some expressed a preference for hospital care at the end, especially where more intimate care tasks might be involved. Their research suggests that personal, particularly very intimate care may entail different choices from other aspects of care
Conclusion
7.18 The research record emphasises the importance of looking at the views and experiences of service users and informal carers, including in the course of consultations aimed at service development.
7.19 Older people who comment on services emphasise the importance to them of choice and independence, and they want services which promote and support these. They do not single out personal care as a specific separate category, but see their needs for care and support holistically. This is reflected in recent research on older people's own perceptions of quality of life.
7.20 Nevertheless, older people and informal carers have been shown to be broadly supportive of free personal care and, particularly, opposed to means testing to ascertain service entitlement. Research has shown that older people are willing to use their own financial resources to maintain independence, but that long term care is not necessarily a priority for expenditure. We noted previously that the general population has been found to be supportive of the general principle of the policy.
7.21 The potential alternative approach of Direct Payments has not been widely used in Scotland, and there is debate about its appropriateness for older people.
7.22 Service users' reported experiences vary according to ethnicity, locality and socio-economic group.
7.23 The research on informal carers lacks insight into personal care and peoples views about it, despite indications that this is a particularly sensitive area. The care homes research and work on minority ethnic groups also highlights the particular sensitivities of personal care.
7.24 In reviewing research on the views of service users, this chapter has noted that there is very little work focused on personal care and in particular on the Scottish policy of personal care. This does not imply, however, a need for extensive work on this topic. Rather, there are particular issues which would merit further investigation. These are:
- The conduct and effectiveness of consultation exercises, particularly whether older people are genuinely included;
- Whether Direct Payments can improve older people's experiences of care, including personal care. Currently, they are little used, and the limited research available to date suggests that objections to them come more from professionals than from older people themselves;
- The sensitivities surrounding personal care, which is a little-discussed topic, despite being central to older people's dignity;
- The role of informal carers. This is linked with our earlier observations about their continuing importance combined with lack of knowledge about potential choices of caring tasks now that free personal care is available.
7.25 The focus on service users may imply that the views of older people and the population in general are of no significance. It is of course important to consider other views, especially those of new generations whose attitudes towards long term care may be different from those of current users. Survey research which can address these questions is merited.
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