Autonomy,Choice and Control for Older Users of Home Care Services: Current Developments in Swedish Eldercare

In Sweden, a policy shift towards more individualized eldercare, with an emphasis on consumer choice, has taken place. The aim of this study was to analyze the processes and practices of individualized eldercare, focusing on preconditions for older peoples’ choice and control. Data consist of qualitative interviews with users of home care services (n – 12) and staff (n – 12) and participant observations (n – 7) of meetings between staff and older people. The choice and control available to older users emerged as decisions about ‘what’ care and services, ‘who’ should provide the care and services, and ‘how’ the care and services should be performed. Three approaches to enable older people choice and control over their home care services were revealed: test and revise, services elaborated in close collaboration between users, care managers and home care staff; choices in the moment, users could choose services at each occasion; and quality improvement through competition, competing providers develop attractive services. The findings could guide policy makers in combining the strengths of these approaches to enable older people in need of support to become co-producers in designing, managing, as well as consuming, care and services. Future quantitative research is needed to achieve generalizable knowledge about the strengths and weaknesses of different ways to organize eldercare services.     

Raising the Quality of Home Care: A Study of Service Users' Views

Raising standards is one of the key objectives of the British government's Modernizing Agenda. The quality of life of vulnerable older people who are being maintained at home is fundamentally dependent on the quality of the home‐care services they receive, so raising standards of home care is clearly central to this agenda. This paper draws on a small‐scale study of service users and providers to examine the aspects of quality of home care of importance to older people, their experiences and barriers to improvement. Six key aspects of quality were investigated: reliability, continuity, flexibility, communication, staff attitudes and skills and knowledge. If performance indicators are to have the desired effect, more work needs to be done to ensure they reflect key aspects of quality from the user perspective. We identify potential areas for improvement in commissioning and organization but these all have resource implications that will need to be met if home care is to realize its full potential in maintaining and improving quality of life for older people.     

Promoting Personalization in Social Care Services for Older People

This article presents findings on 4 themes associated with the personalization of social care for older people: integration of health and social care services; initiatives that prevent the need for more costly interventions; services to maintain people at home; and systems that promote choice, control, and flexibility. The quantitative study utilized data from a national postal survey conducted in England. Findings suggest variable progress regarding the range and style of support available to older people. These are discussed in the context of service integration, community-based services, and consumer-directed care. Implications for service development and future research are highlighted.     

Integrating Health and Social Care at the Micro Level: Health Care Professionals as Care Managers for Older People

A common problem in the provision of coordinated long‐term care is the separation of health and social care. The present government has been increasingly concerned with promoting convenient, user‐centred services and improving integration of health and social care. One arrangement that could contribute to this for some older service users is for health care staff to act as care managers, coordinating the provision of both health and social care. This paper presents the findings of a survey of arrangements in place in local authorities for health staff to work as care managers for older people. This was designed to provide details about the range and scope of care management activities undertaken by health care professionals. Key areas of enquiry included: which kinds of health care staff undertook care management and in what settings; how long the arrangements had been in place and how widely available they were; whether there was a distinction between the types of cases and care management processes undertaken by health care staff compared with their social service department counterparts; and what management and training arrangements were in place for the health care staff.     

Facing Up to Underfunding: Equity and Retrenchment in Community Care

Local social services departments in the UK are expected to distribute their cash-limited budgets for community care in ways that achieve an equitable allocation of resources in situations where, with present levels of funding, they cannot meet all the needs with which they are presented. This paper discusses a case study of the introduction of a "needs-based" formula to allocate a local authority's budget for home care services and a follow-up survey to investigate whether services reached the people intended to benefit. The article argues that the "gatekeeping" role of community care assessments is important to safeguard equity without the inflexibility of highly standardized tests of eligibility. However, with the new Labour government seeking to reduce dependency on public expenditure, and a growing lobby for national standards of social care, it will be increasingly important that local authorities justifiy their different practices with evidence about how they relate to local needs.     

Nursing Homes in England and their Capacity to Provide Rehabilitation and Intermediate Care Services

The numbers of older people living in residential and nursing home care in the UK have risen exponentially since the early 1980s when the closure of long–stay geriatric wards and changes in social security funding of care home places led to a rapid expansion of the care home industry. While the implementation of the 1990 National Health Service (NHS) and Community Care Act shifted the responsibility for the commissioning and funding of these services to local authority social services departments, the provision of most health services (such as general practitioner care, physiotherapy and specialist nursing services) to nursing home residents remains the responsibility of community–based NHS practitioners. Recently, the attention of policy–makers in the UK has been focused on the need to improve the throughput of the acute sector. Older people who have received treatment but are not yet able to return to their own homes are to be transferred into intermediate care facilities, often by using nursing home beds, with the aim of supporting short–term rehabilitation outside of the acute sector. This paper presents evidence from a study of health service provision to older people living in nursing homes in England. It examines whether nursing homes have the capacity to fulfil the rehabilitation and intermediate care function envisaged by policy–makers. It concludes that shortfalls in the provision of NHS services to nursing homes and difficulties faced by nursing homes in paying for health services themselves may hinder the rehabilitation potential of intermediate care placements in nursing homes.     

Reconciling Cash and Care: Home Care Charges and Benefit Checks in Social Services

Correspondence to Pete Alcock, Health and Community Studies, Sheffield Hallam University, Collegiate Cresent, Sheffield S10 2BP Summary This article contains the report of a small research projecton the development of welfare rights checks for home care clientsin social services departments. Welfare rights take-up activityhas become an important feature of provision by local authoritysocial services departments, frequently targeted on particulargroups of clients known to experience problems in claiming fullbenefit entitlement. Users of home care services are such aclient group. Take-up work with home care clients is also, however,a product of the impact of community care policy changes andof financial pressures on local authority social services. Thesehave resulted in the introduction of charges for home care servicesby many authorities, and the use of rebates from such chargesto protect low income service users. Welfare rights work hasthus become an important feature of the reconciliation of thesenew charging policies with the continued service needs of poorhome care clients. The research examined a successful take-upinitiative, linked to home care charges, in Sheffield and contrastedthis with similar activities in other authorities throughoutthe UK. The conclusion is reached that levels of non-take-upof social security benefits are particularly low amongst homecare clients and that benefit checks can secure significantadditional income for them, which may also have the indirecteffect of increasing the income to social services departmentsfrom the charges for home care services.     

Increasing Choice and Control for Older and Disabled People: A Critical Review of New Developments in England

This paper critically examines new policies currently being implemented in England aimed at increasing the choice and control that disabled and older people can exercise over the social care support and services they receive. The development of these policies, and their elaboration in three policy documents published during 2005, are summarized. The paper then discusses two issues underpinning these proposals: the role of quasi‐markets within publicly funded social care services; and the political and policy discourses of consumerism and choice within the welfare state. Despite powerful critiques of welfare consumerism, the paper argues that there are nevertheless very important reasons for taking choice seriously when considering how best to organize and deliver support and other services for disabled and older people. A policy discourse on consumerism, however, combined with the use of market mechanisms for implementing this, may be highly problematic as the means of creating opportunities for increased choice and, on its own, risks introducing new forms of disadvantage and social exclusion.     

“A game of two halves?” Understanding the process and outcomes of English care home closures: Qualitative and quantitative perspectives

With care services increasingly delivered via a market there is always a risk that care homes could fail financially or struggle in terms of quality, ultimately having to close. When this happens, the received wisdom is that subsequent relocation can be detrimental to the health and well‐being of older residents (possibly even culminating in increased mortality). However, there is very little formal evidence in the United Kingdom (UK) or beyond to guide policymakers and local leaders when undertaking such sensitive work. Against this background, this article reports findings from an independent evaluation of what is believed to be the largest care home closure program in the UK (and possibly beyond). This consisted of qualitative interviews with older people, families, care staff, and social work assessors during the closure process in one case study care home and one linked day center, as well as self‐reported health and quality of life data for older people from 13 homes/linked day centers at initial assessment, 28 days after moving and at 12‐month follow up. The study is significant in presenting public data about such a contested topic from such a large‐scale closure process, in its focus on both process and outcomes, in its mixed‐methods approach, and in its engagement with older people, families, and care staff alongside the use of more formal outcome measures. Despite significant distress part‐way through the process, the article suggests that outcomes either stayed the same or improved for most of our sample up to a year after moving to new services. Care homes closures may thus be a “tale of two halves”, with inevitable distress during the closure but, if done well, with scope for improved outcomes for some people in the longer term. These findings are crucial for current policy and practice given that the risk of major closures seems to be growing and given that there is virtually no prior research on which to base local or national closure processes. While some of this research is specific to England, the underlying issue of care home closures and lessons learned around good practice will also apply to other countries.     

The Effects of Marketization of Long-term Care Services for Older Adults in Korea

To cope with the rapid increase in aging population, the South Korean government introduced new long-term care insurance in 2008 by using the market forces and mechanisms of competition and choice. The study explored the effect of the marketization of long-term care (LTC) services on the provision of services under the Korean long-term care insurance (LTCI) system. By adopting qualitative semi-structured in-depth interview methods, the experiences of 17 home visiting service provider managers were examined. The study results suggest that the marketization of LTC services faces several challenges. Some of the stakeholders in the field, such as home visiting service providers, care workers, and older clients, appear to employ unlawful activities or unprincipled behaviors to maximize their individual interests. The results also suggest that the unprincipled behavior, unlawful activities, and financial problems that service providers face contribute to low quality care services. Future studies should explore these issues using larger samples of service users and providers.     

Promoting personalization in social care services for older people

This article presents findings on 4 themes associated with the personalization of social care for older people: integration of health and social care services; initiatives that prevent the need for more costly interventions; services to maintain people at home; and systems that promote choice, control, and flexibility. The quantitative study utilized data from a national postal survey conducted in England. Findings suggest variable progress regarding the range and style of support available to older people. These are discussed in the context of service integration, community-based services, and consumer-directed care. Implications for service development and future research are highlighted.     

Users as Citizens: Collective Action and the Local Governance of Welfare

Self-organization amongst users of community care services preceded the consumerist developments of the 1980s and early 1990s, but can be considered to have been "legitimized" by top-down objectives relating to "user involvement". Nevertheless, the objectives and value bases of disabled people's organizations and organizations of users (or survivors) of mental health services have not always been consistent with those of consumerism, and user groups have experienced tensions in determining the extent to which they should respond to official agendas. Drawing on theories of new social movements and of citizenship, this paper considers the developing place of user organizations within systems of local governance. It looks at the way in which groups have sought to assert the legitimacy both of experiential knowledge and of their position as citizens in the face of official responses which have constructed them as self-interested pressure groups. It draws on empirical research investigating local groups of disabled people and of mental health service users conducted in the first part of the 1990s. It discusses the significance of shared identity as a basis for collective action alongside more pragmatic motivations to influence the nature of health and social care services. In the context of appeals to "community" and "partnership" which are starting to replace the discourse of markets and contracts as the key metaphor for both policy-making and service delivery, the article considers likely future roles for groups comprising people often excluded from community.     

Combining Work and Care: Carers' Decision-making in the Context of Competing Policy Pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision‐making around work and care, drawing on evidence from interviews with 80 working‐age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means‐tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.     

Professional Perspectives on Decision Making about the Long-term Care of Older People

With the increasing pressure on social and health care resources,professionals have to be more explicit in their decision makingregarding the long-term care of older people. This groundedtheory study used 19 focus groups and nine semi-structured interviews(99 staff in total) to explore professional perspectives onthis decision making. Focus group participants and intervieweescomprised care managers, social workers, consultant geriatricians,general medical practitioners, community nurses, home care managers,occupational therapists and hospital discharge support staff.The emerging themes spanned context, clients, families and services.Decisions were often prompted by a crisis, hindering professionalsseeking to make a measured assessment. Fear of burglary andassault, and the willingness and availability of family to helpwere major factors in decisions about living at home. Serviceavailability in terms of public funding for community care,the availability of home care workers and workload pressureson primary care services influenced decision ‘thresholds’regarding admission to institutional care. Assessment toolsdesigned to assist decision making about the long-term careof older people need to take into account the critical aspectsof individual fears and motivation, family support and the availabilityof publicly funded services as well as functional and medicalneeds.     

The Economic and Gender Consequences of South Africa's Home‐based Care Policy

South Africa's approach to care provision in the era of HIV/AIDS is home‐ and community‐based care, but in reality care for ill people in the home is provided on an unpaid basis, predominantly by women. But how much do they spend on this care work, in time and money? And what economic consequences does this policy have, particularly for poorer women? This article is based on findings from a study that focuses on unpaid care provision within the home for those in late‐stage HIV/AIDS in KwaZulu‐Natal, South Africa, and specifically on the costs of such provision. The findings show that female caregivers are bearing the bulk of the costs of care provision for ill people within the home on an unpaid basis. Home‐based care is cost‐effective for the provincial government but not for unpaid caregivers who are subsidizing the provincial economy. While hospital care for people with HIV/AIDS has been capped, home‐based care services have not been increased to a commensurate level. Unpaid caregivers and ill people within the home are largely disconnected from the health system. The analysis clearly shows that the home‐based care policy is not resulting in appropriate or sufficient support for these individuals in need and needs to be revised.     

Mainstreaming Equality: Implications of the Provision of Support at Home for Majority and Minority Ethnic Older People

This paper explores the potential impact and practical difficulties of mainstreaming equalities in support at home for minority and majority ethnic older people, drawing on two linked empirical research projects. Social care providers have long faced difficulties in catering for diversity of need. Recently, diversity within minority ethnic groups has increased, and there is now a statutory duty to promote equality. Research findings illustrate the complexity of exclusionary processes, with particular reference to the example of health care. There is a gap between the high‐level commitment to mainstreaming equality and people's lived experiences. Autonomy and choice are central to community care legislation, policy and practice guidance, but in reality, the research shows that choices are limited for both minority and majority older people. More user‐focused approaches and grassroots involvement may offer ways forward, despite some limitations of current models. In conclusion, the potentiality of a broad mainstreaming equality perspective is highlighted, but challenges include a need for a more grounded approach, better engagement with user groups and a need to focus on understanding issues of implementation.     

Motivation and Commissioning: Perceived and Expressed Motivations of Care Home Providers

Commissioning of social care for older people has seen major changes since the early 1990s. Considerable responsibility now rests with local authority staff, whose views of care home providers’ motivations, their perceived strengths and weaknesses as service providers, will have a bearing on commissioning decisions. We examine commissioners’ views of provider motivations in eight English local authorities and compare their perceived motivations with providers’ expressed motives. Data were collected through semi‐structured face‐to‐face interviews with commissioners and care home providers. Providers are generally perceived by commissioners as highly altruistic, but also relatively financially motivated individuals. Further analysis revealed significantly different views towards profit‐maximizing, which commissioners perceive as very important, while providers consider it to be of little motivational value. Private sector providers are described by commissioners as significantly more motivated by personal income. Associations are found between commissioners’ perceptions of motivations and the nature of their relationships with providers. Perceptions of providers’ motivations appear important within the commissioning framework.     

Person‐centredness in the community care of older people: A literature‐based concept synthesis

‘Person‐centredness’ is a ubiquitous term, employed in modern care services to signify policies and practices that attend to the uniqueness of each individual user. Despite being highly regarded in older adult community care services, there is much ambiguity over its precise meaning. Existing reviews of person‐centredness and its attributes have tended to focus on the medico‐nursing literature, neglecting other interpretations, such as those relevant to community social care. A new literature‐based concept synthesis reported here identified 12 common attributes within the broad themes of ‘understanding the person’, ‘engagement in decision‐making’ and ‘promoting the care relationship’. The review also contrasts how these attributes are applied across different interpretations of person‐centredness. The article argues that not all attributes necessarily pull in the same direction, and that older adults may require them to be delivered in different ways than they are to younger people. Thus, a ‘one‐size‐fits‐all’ approach should be discouraged in community care. Key Practitioner Message: ? ‘Person‐centredness’ is open to multiple interpretations, causing difficulties for services trying to gauge performance and quality; ? Three themes are central to person‐centred services: ‘understanding the person’, ‘engagement in decision‐making’ and ‘promoting the care relationship’; ? A ‘one‐size‐fits‐all’ approach to applying person‐centredness is to be discouraged.     

Older Persons’ Views on Using Cash‐for‐Care Allowances at the Crossroads of Gender,Socio‐economic Status and Care Needs in Vienna

The article aims to contribute to understanding social inequalities resulting from familization (or de‐familization) tendencies among cash‐for‐care beneficiaries in a Conservative welfare state. It highlights justifications for choices in accessing and using care in a cash‐for‐care scheme from the perspective of care recipients aged 80 years and older in Vienna. Along key dimensions characterizing care recipients’ experiences, we identify four different user groups, which reflect recipients’ individual characteristics, particularly gender, socio‐economic status (SES), and care needs, and the respective care arrangement. The groups are dubbed: (1) the self‐confident; (2) the illiterate; (3) the dependent; and (4) the lonely. Narrative interviews with 15 frail older people were held in 2014 and analyzed using the framework analysis method. Results show that familiarity with support structures associates with higher SES, while those who depend on others for acquiring information or organizing care express ambivalence in choosing between formal and informal care. Engagement in deciding which care type to use is limited among people of lower SES or with complex care needs, but own experience as informal caregiver for a family member increases care recipients’ long‐term care (LTC) system literacy. Gender differences among care recipients were limited, yet middle‐class female recipients often expressed normative claims for family care from female relatives. We conclude that unconditional care allowance schemes may reinforce existing gender relations, particularly among informal caregivers, as well as underpin socio‐economic differences among LTC users in old‐age. Results also partly question the assumptions of choice and empowerment implicit in many cash‐for‐care schemes.     

Compulsory intergenerational family solidarity shaping choices between work and care: Perceptions of informal female carers and local policymakers in Estonia

Estonians are obliged by law to provide maintenance for family members who are unable to cope by themselves. As a result, 80% of fragile older people receive informal care. Whether this is because the carers themselves feel solidarity and choose informal caring or because they lack alternatives is the question. We applied the cultural approach for explaining the construction of compulsory family solidarity in care provision to older people through the perceptions of informal carers and policy actors. Our interest is in how filial norms framed by individual responsibilities of care provision required by law can influence (i) informal carers’ perceptions concerning their choices between work and care and (ii) impact policy actors’ perceptions concerning eldercare service provision. Analysing the empirical data produced during focus groups with female carers and interviews with policy actors, we demonstrate the triple‐fold pressure to informal caregiving as an expression of compulsory family solidarity. Key Practitioner Message: ? The article demonstrates how the national Family Law Act constitutes a compulsory requirement of family solidarity in society; ? The compulsory family solidarity norm influences local‐level policymaking and inhibits the development of formal care services for older people; ? Informal carers’ choices between work and care are shaped by their personal filial norms, familialistic policymaking, and pressure exerted by older people.