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.     

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.     

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.     

Informal care in Sweden: a typology of care and caregivers

This study describes and analyses the types of informal care provided in Sweden and whether it is possible to distinguish different types of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61 per cent. The results showed that there were large differences in the numbers of male and female carers when the data were divided into a typology of care categories based on different caring tasks. Women were much more likely than men to be involved at the 'heavy end' of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely to provide some kind of practical help for a mother or a neighbour/friend. Even though the Swedish welfare state has been described as universal and characterised by an extensive system of benefits and services intended to cover the entire population, the results here indicate that informal care plays an important role and that the gender role patterns are similar to those observed in other types of welfare state. When discussing support systems it is important for social policy to develop programmes that take into account the support needs of both caregivers and care recipients, and not to see their needs in isolation from the social care system as a whole.     

Differences and similarities in monetary benefits for informal care in old and new EU member states

This article presents an overview of the monetary benefits available in the context of long‐term care provided by family or other informal carers in 11 old and 10 new EU member states. All but one country in our sample offer at least some monetary benefits that can be used to help finance informal care. Old EU member states tend to direct benefits to individuals in need of care, whereas new EU member states place more emphasis on benefits for carers. Among new EU member states, monetary benefits are less often means‐tested and tend to be lower compared with benefits in old EU member states. Because social policies in many countries increasingly rely on monetary benefits rather than on benefits in kind and because the share of informal care in the overall provision of elderly care will scarcely decline, monetary benefit incentives for labour market participation need to be carefully monitored.     

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.     

Exploring Social Care: Applying a New Construct to Young Carers and Grandparent Carers

Mainstream literature on paid care for children, frail elderly people and people with chronic illness or disability, and unpaid care provided usually by family members within households and kin networks tends to establish dichotomies: formal/informal, commodified/non‐commodified. Recent feminist literature rejects these dichotomies, developing models of social care in which the interconnections of paid and unpaid care are mapped within policy frameworks. This paper uses theoretical frameworks of ‘social care‘: care as labour; care as a relationship embedded in obligation; care incurring a range of costs; to explore two case‐studies: young carers aged up to 24 years who are most often caring for a co‐resident parent; and grandparents who are the primary carers of their grandchildren. The latter may occur under the aegis of child protection authorities, or Family Court orders, or in informal arrangements, not licensed by state authorities. This analysis of the international literature and Australian research data affirms the power of the social care framework, and also shows the influence of social policy settings on informal care provision.     

‘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.     

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.     

An investigation of the needs of grandparents who are raising grandchildren

Evidence suggests that children in out‐of‐home care function better when placed in kinship compared with foster care. Less is known about the functioning of children in the unique form of kinship care where grandparents are caring full‐time for their grandchildren in informal care arrangements. As grandparent carers are increasingly taking on this role, it is timely to investigate the functioning of the children in this form of care and the characteristics of the grandparents themselves. We compared the functioning of children in the two types of care. We also investigated carer characteristics, including the relationship between child functioning, social support and daily hassles on carer stress. One hundred fourteen cares and 180 children were assessed on a range of demographic and clinical measures. Children in grandparent care were displaying better behavioural and adaptive functioning than children living with foster carers. Grandparent carers reported higher levels of distress in the carer role. Predictors of carer stress included severity of child behaviour problems and daily hassles. Both group of carers and the children in their care would benefit from increased support from treatment services.     

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.     

Informal care in farming families in Northern Ireland: some considerations for social work

Summary This paper is the result of a study of the dynamics of care-givingwithin farming families in Northern Ireland. It is argued thatwhilst much is known about informal care, existing knowledgeis largely urban based and quantitative, and therefore limited.Following in-depth interviews with 'farm wives' it is concludedthat for these women care-giving patterns are dependent on aparticular set of cultural expectations and norms. Within farmingfamilies there is much resistance to becoming involved withformal social services. Outside help with the care of one'selderly relatives is often seen as an admission of failure,as there is a pride in being able to look after one's familymembers. Users of social services, which still evoke associationswith the Poor Law, are highly stigmatized. It is claimed thatfor these women the concept of 'carer' has no bearing on theirlives and is not something to which they can relate. The paperchallenges the depiction of caring as a one-sided difficultrelationship where the person being cared for is a passive recipient.It is suggested that caring is not necessarily oppressive butmay be rewarding and positive. It concludes that if social workersare to support and facilitate informal care they must be awareof and fully understand the diversity of care provision andthe different contexts in which care is undertaken. If interventionis to take place then it must be sensitive to the deeply embeddedideas and perceptions that exist within farming families.     

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.     

Decent work for sustainable development in post‐crisis Nepal: Social policy challenges and a way forward

Although the Decent Work agenda has received significant attention in the context of sustainable development, the formulation and implementation of appropriate social policies in developing countries remain an underexplored subject. This article responds to this gap and traces country‐specific Decent Work related policies and programs in Nepal—which is recovering from two major crises: a decade‐long armed conflict that ended in 2006 as well as the 2015 earthquake. Drawing on Critical Policy Analysis framework, this article examines how key tenets of the International Labour Organisation's Decent Work platform, namely creation and provision of employment, social protection, social dialogue and rights at work have manifested in Nepal. The findings indicate that while attempts have been made to embrace the Decent Work agenda into social policies and programs, structural instability of political processes means that there is a lack of strategic directions to address a capacity deficit specific to the informal sector and outbound labour migrants. The article makes broader analytical contributions towards evaluating the implementation of social policies driven by the global priority in the context of developing nations with weak governance settings. In countries like Nepal, where the majority of workers are located within the informal sector and as such the administrative reach and effectiveness of Decent Work related social policies designed for the formal sector are limited.     

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.     

The extent and limits of solidarity in Dutch health care

Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.     

Well‐being among employed and non‐employed caregiving women in Taiwan

Chou Y‐C, Kröger T, Chiao C, Pu C‐Y. Well‐being among employed and non‐employed caregiving women in Taiwan This study addressed various groups of non‐employed/employed and non‐caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well‐being, as measured by self‐rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well‐being of carers of young children (n= 1,697) were also analysed. The results showed that non‐employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non‐employed, ought to be supported by policies. To improve carers' well‐being, care–work reconciliation among working‐age women needs to be included in the future care scheme in Taiwan.     

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.     

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.