‘Replacement Care’ for Working Carers? A Longitudinal Study in England, 2013–15

In the context of rising need for long‐term care, reconciling unpaid care and carers’ employment is becoming an important social issue. In England, there is increasing policy emphasis on paid services for the person cared for, sometimes known as ‘replacement care’, to support working carers. Previous research has found an association between ‘replacement care’ and carers’ employment. However, more information is needed on potential causal connections between services and carers’ employment. This mixed methods study draws on new longitudinal data to examine service receipt and carers’ employment in England. Data were collected from carers who were employed in the public sector, using self‐completion questionnaires in 2013 and 2015, and qualitative interviews were conducted with a sub‐sample of respondents to the 2015 questionnaire. We find that, where the person cared for did not receive at least one ‘key service’ (home care, personal assistant, day care, meals, short‐term breaks), the carer was subsequently more likely to leave employment because of caring, suggesting that the absence of services contributed to the carer leaving work. In the interviews, carers identified specific ways in which services helped them to remain in employment. We conclude that, if a policy objective is to reduce the number of carers leaving employment because of caring, there needs to be greater access to publicly‐funded services for disabled and older people who are looked after by unpaid carers.     

The Impact of Caring on Informal Carers' Employment,Income and Earnings: a Longitudinal Approach

In Australia the policy balance has shifted away from institutional forms of health and aged care towards supporting people in their own homes. This change presupposes a significant and growing supply of informal caring labour. A large proportion of informal carers (40–60 per cent) currently combine paid employment with their caring responsibilities. Using the longitudinal Household, Income and Labour Dynamics in Australia Survey, the paper examines the effect of caring on employment, hours worked and earnings. The analysis shows that working age carers experience disadvantage. Carers are more likely than non‐carers to reduce their hours of work or exit from the labour force, and earn lower levels of income. In planning for an ageing population, policies will need to address these negative effects and privatised costs of caring if the supply of informal care is to be sustained in the future.     

Change and Adaptation in Families with Young Carers

Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families. These include family expectations about caring; who is available to care; the willingness and capability of young carers to help; and the degree of choice or obligation they experience. Formal and informal support services from outside the family, and environmental adaptations, can reduce the amount of family caregiving required, increase choice and contribute to balancing life for carers.     

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.     

Carer Break or Carer‐blind? Policies for Informal Carers in the UK

This article examines three policy statements on informal carers published in the UK in 1999—the National Strategy for Carers, the report of the Royal Commission on Long Term Care and the note of dissent by two members of the Royal Commission. These three documents contain two rather different approaches to policy for carers. On the one hand, the National Strategy and note of dissent emphasize respite care or short-term breaks for carers, and are concerned with sustaining the well-being of carers as well as ensuring the continuation of caring itself. The Royal Commission, on the other hand, emphasizes support for the older or disabled person who is being cared for, as a means of supporting the carer, and advocates "carer-blind" services. It is argued that this policy contains within it the potential to substitute for or replace the carer and that this represents a radical new departure for social policy for carers in the UK. The advantages and disadvantages of the two policy approaches are explored. It is argued that policies for carers should include both services specifically for carers, like breaks from caring, and services provided for the cared-for person, like domestic and personal care services. Wider issues about the proper boundary between family and state care are explored.     

Challenging Professional Roles: Lay Carers' Involvement in Health Care in the Community

The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social‐care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology‐dependent children, and home‐care workers involved in the “direct payments” scheme. Findings are reported in the areas of decisions about appropriate caring roles, the lay–professional boundary, training and respite opportunities and the expertise of lay carers. Recommendations for policy and practices are made.     

Income support for Australian carers since 1983: social justice,social investment and the cloak of gender neutrality

Income support for carers has been available in Australia since the early 1980s. In contrast to most other forms of income support, eligibility for Carer Payment has been progressively expanded in recent years, and increasing numbers of carers are claiming the payment as a result. This article examines the history of income support for carers by reviewing changes in eligibility criteria in the social security legislation and considering how those changes were framed. We argue that reforms to carers' income support have developed within competing frames of social justice and social investment, with an increasing emphasis on a social investment discourse, which prioritises paid work over care. Neither of the dominant frames addresses gender equality, and in practice, income support policy has reinforced familial (women's) responsibility for caring. Given the gendered nature of caring in Australia, gender equality issues must be considered in future policy reforms to ensure that the competing pressures on women to care and to engage in paid work do not lead to greater disadvantage and inequality for women and the people for whom they care.     

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.     

Is cash allowance a way to ease child care burden? Views of carers in Hong Kong

Caring for the carers is not only a policy challenge for the government but also a global concern to achieve gender equality by restructuring welfare for care. Paying informal carers is one of the measures that address their needs, which is being practiced in Western countries for more than 10 years now. Financial support for care does not only value the contribution of carers but also compensate for the loss of carers caused by unpaid care duties. However, cash for care is a complex issue because it is located within a number of different policy domains that may be considered controversial. This study discusses the views of carers on cash allowance and identifies issues affecting the support provided to the informal care system in Hong Kong. The discussion is based on the findings from the focus group interviews with 11 groups of carers with different socioeconomic backgrounds.     

From Assistance to Prevention: Categorizing Young Carer Support Services in Australia,and International Implications

Young people who provide unpaid care for a relative with chronic illness or disability are a growing focus of public policy and research in Australia and internationally. Support services for these young carers have emerged, but not enough is known about their effectiveness. This article develops an analytical framework that categorizes young carer support services according to their goals and the types of intervention provided. The analytical framework is based on Australian data. It is applied to young carer support services available in Australia but may be applicable to other countries. The aim of the framework is to provide a structure for assessing the effectiveness of current services in supporting young carers by clarifying service goals and identifying gaps in existing service provision. The framework contributes to conceptual discussions about young carer supports, and it can be used to guide future policy development. The article draws on Australian and international literature as well as findings from a recent Australian study on young carers. The proposed framework groups young carer support services according to three overarching goals: assisting young people who provide care; mitigating the care‐giving responsibility; and preventing the entrenchment of a young person's caring role. The framework is applied to an audit of Australian support services for young carers, illustrating how it can be used to assess existing supports for young carers and inform future policy development. The findings suggest that most services in Australia fall into the categories of assistance and mitigation, while few contain preventative elements.     

Grounding Constructions of Carers: Exploring the Experiences of Carers through a Grounded Approach

Social and political constructions of carers have been criticizedfor undervaluing the complexities of the experiences of carers.However, relatively little research has attempted to generatemore meaningful constructions of carers by drawing these considerationstogether. The purpose of this article is to begin addressingthis need. To accomplish this, the article is presented in twosections. First, an overview is provided on the current constructionsof carers and suggested considerations for research. Second,with this overview as its context, a study, taken from the author’sacademic dissertation, is presented. The study sets out to generatemore meaningful constructions of the caring experience througha grounded approach. The findings are based on a focus groupand interviews with fourteen carers in total. A diverse rangeof participants were involved, in order to generate categoriesthat would hold more relevance across caring experiences. Fourcommon categories for carers emerged, along with propertiesthat explained differences in experiences. The categories ofwhen carers start to care, circumstances change over time, justifyingthe use of support and using support are subsequently discussedin relation to current constructions, practice and policy.     

Charging and Quasi-Markets in Community Care: Implications for Elderly People with Dementia

Social services authorities in the UK are increasingly involved in charging and fee collection activities with clients in receipt of community care services. This article explores the implications of these developments for elderly people with dementia. The starting point of the article is a critique of existing legal and administrative options for handling other people's money, including the difficulties and dilemmas raised for both paid and unpaid carers by the existing arrangements. This is then related to the failure of charging and fee collection systems which have developed as a result of the community care reforms to address the particular needs of elderly people with dementia. A case study of policies in one local authority is outlined and this is followed by the presentation of the view of 37 fieldlevel professionals who were interviewed in focus groups. The concerns of these respondents included the complexity of the assessment task, conflicts between care managers and finance/revenue staff, the difficulty of defining and responding to financial abuse, and dilemmas over the extent to which relatives and carers should be trusted. The final section of the article considers the implications of a move to quasi-markets in social care for elderly people with dementia, particularly in terms of their vulnerability to financial exploitation.     

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.     

Grandparent Carers II

Summary

A demonstration project was undertaken in two of New York City's five boroughs using an intervention model to assess how a three-prong approach using outreach, provision of support groups, and case management could be used to aid grandparents acting as primary carers for children with developmental delay or disabilities. Three small community-based agencies participated in the demonstration. Several common themes were identified that warrant attention when working with older adults who assume later-age parenting roles: (1) recruitment, (2) pressing grandparent problems, (3) unresponsive service systems, (4) falling between the cracks, (5) mutual support, and (6) need for long-term planning.     

A Model for the Comprehensive Assessment of Older People and Their Carers

Correspondence to Beverley Hughes, Department of Social Policy and Social Work, University of Manchester, Oxford Road, Manchester M13 9PL. Summary Although local authorities and social service departments arein the process of developing systems of assessment in relationto care management, there has been little debate about the principleswhich ought to underpin assessment processes, nor about thepurpose, scope, and content of comprehensive assessment witholder people. This article discusses these issues and proposesa framework for comprehensive assessment with older people andtheir carers, derived from development work with social workersin a number of local authorities. Of particular importance isthe need for comprehensive assessment to embody meaningful mechanismsfor user and carer participation and empowerment; to acknowledgenot only need and risk but strengths and resources; to regardthe older person as the centre of a network of personal, familial,and social factors which together determine her or his qualityof life and level of risk. The implications for practitionersare examined.     

Renewing the Social Vision of Care

Care is a fundamental condition of human existence, an inherently social activity. Yet surprisingly, care has only recently begun to receive serious attention from social researchers and the public. Despite the fact that care has become a public issue over the past twenty‐five years or so, current thinking in policy and advocacy for carers has developed an overtly narrow and self‐limiting focus with a strong emphasis on the plight of primary or sole carers, with care being seen predominantly as a burden. From looking at Australian policy on carers, it may be concluded that care is essentially understood as a private, individual concern, a one‐way activity in which the active agent, the carer, does something to the other, passive, recipient. The challenge posed in this paper is to move beyond this approach to that of a more social conception of care. Following a review of the uses of the terms ‘care’ and ‘carers’ in the current Australian policy context, a discussion of the meaning of the term ‘care’ is presented and an alternative understanding of the term, with the potential of recognising and promoting care as a complex, social outcome is advanced.     

Till Death Us Do Part? A Critical Analysis of Obligation and Choice for Spousal Caregivers

Research demonstrates a significant number of carers identify obligation or lack of other alternatives as the reasons they undertake informal care. By utilizing critical discourse analysis, this research explores choice for informal caregivers in contemporary Australian social policy. Analysis demonstrates increasing shifts in policy toward choice in consumer-directed care, a feature absent for those who provide care. Familial care is a central pillar of Australian social policy, as it is in many liberal and conservative welfare regimes. Analysis reveals that these core social policies are fundamentally incongruent, with significant implications for individuals and social work practice.     

A Comparative Discussion of the Gendered Implications of Cash-for-Care Schemes: Markets, Independence and Social Citizenship in Crisis?

There are moves across many countries away from state-led provision of services for disabled people towards cash-based systems, which have been welcomed by disabled people as increasing choice and control over services and support, and increasing independence and social participation. However, feminist scholars have long warned about the implications of commodifying care for women, and the possible consequences of substituting cash for services for social citizenship have remained underexplored, for both disabled people generally, disabled women and mothers more particularly, and for personal assistants/care workers. This article will attempt to address that gap by carrying out a comparative literature review and policy analysis of the role of policy development and outcomes in cash-for-care schemes, looking comparatively across policy developments in several countries, as well as developed welfare states beyond Europe to examine: (a) the impact of the tensions between various governance levels, particularly local and national government; (b) the gendered impact of such policies on (for example) gendered divisions of paid and unpaid work, citizenship and social participation; (c) the impact such policies have, or are likely to have, on different groups of men and women across the life course and across different social and economic groups; and (d) how such policies can contribute to the well-being and/or detriment of different groups of women (and men) within different social, political, economic and historical contexts.     

‘It's just like another home,just another family,so it's nae different’ Children's voices in kinship care: a research study about the experience of children in kinship care in Scotland

Growing acknowledgement of the importance of the role of kinship carers in caring and supporting children and young people in Scotland has led to a burgeoning of research on this topic. However, most research has tended to focus on the role of kinship carers. A significant gap has been direct studies into the views and experiences of children and young people living with relatives or friends. This paper seeks to address this by drawing on the findings from a small‐scale qualitative collaborative research project with 12 children and young people living in informal and formal kinship care in the Northeast of Scotland. The literature on foster and kinship care is reviewed and key themes identified. The qualitative research data is outlined employing a thematic analysis approach. The key findings are analysed with a view to the potential implications for policy and practice. The paper concludes with proposals for potential future research.     

Young people's and carers' perspectives on the mental health needs of looked-after adolescents

While the mental health needs of looked‐after young people have been described in a number of clinical studies, the views of looked‐after adolescents themselves concerning their mental health needs have only rarely been reported. This study used focus groups to elicit the ideas and experiences of looked‐after young people in two local authorities in England. Front‐line carers in the region were also surveyed. Young people and carers were agreed in highlighting the damaging effects of the discontinuity and change experienced in the looked‐after system. Young people emphasized the importance of exercising choice and control when seeking and receiving support and identified the value of positive role models provided by ‘survivors’ of the care system. Carers reported high levels of risk behaviour, particularly self‐harm, among young people in children's homes. These differing perspectives need to be openly acknowledged and negotiated within care settings in order that relevant and accessible therapeutic and support services can be offered to looked‐after adolescents.