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Patients are not isolated individuals, but have friends and families who care about them and, often, care for them. This is especially true for children. Parents' well-being and quality of life is likely to be affected by the illness of their child, especially when the illness is severe, even if they do not provide informal care. This chapter deals with the inclusion of the costs and effects on caregivers and other family members in economic evaluations, with a focus on informal care. Key topics are illustrated using data from previous studies. In the first part of the chapter, the burden of providing informal care to children and its valuation for economic evaluations is described. Next, attention is turned to family effects. Finally, recommendations and conclusions are provided for incorporating caregiver and family effects in economic evaluations of child health.

This chapter examines the experiences of families raising children from birth through preschool in Latin America, Asia, Europe, and North America. It reports findings from in-depth studies of more than 1,000 parents, childcare providers, and employers. When parents of preschool children used informal care provided by children and youths, their young children were more likely to experience accidents or emergencies while the parents worked. Parents who were unable to find or afford adequate childcare often brought their children to work—even when they were aware that their work environments were perilous—because they lacked any other alternative. When families used formal childcare, their children were less likely to develop behavioral or academic difficulties than when they used informal childcare. While in theory, care provided by adults in informal care settings could be of equal quality to formal settings, this was not the common experience of most parents, especially low-income families.

Informal care is a significant source of support for dependent adults. Therefore, policies need to address its potential benefits and costs to care recipients, family carers and society at large. In this context, the purpose of this chapter is threefold: to classify policies supporting informal care and to introduce their major building blocks; to illustrate changes in policy logics and instruments over time and to review the empirical research on the success of specific approaches. Over the past 15 years European care regimes, including policies to support informal care, seem to have moved closer together. Several countries now apply dual approaches. Evidence on the effectiveness of support measures is still scarce. Caregiver education and respite care appear effective. The impact of support measures varies by intervention characteristics and subgroups of carers. Studies point to a gap between the support desired by informal carers and what is being offered to them. Support should be tailored to the specific needs of subgroups of carers and guided by systematic evaluation.

This chapter examines the system of informal care in Great Britain. It suggests that the culture of care in Britain moves within a triad of private, public and social dimensions, in which caring is located within individualised strategies and that family strategies and histories feature strongly in determining the adaptation processes. It argues that British carers are positioned between the internal pull of the West German culture of care and the external push of the East German culture of care.

In Flanders (the northern region of Belgium), Personal Assistance Budgets (PABs) have been introduced for disabled people. PABs are cash payments that allow the recipients to employ their own personal assistants. Under the scheme, relatives have no independent entitlement to financial compensation in respect of the care they provide, but must enter into a legal labour relationship with the budget holder. This chapter examines how the PAB arrangement works in practice and the consequences for paid informal carers. It begins by outlining a typology of arrangements for long-term care that sets PABs within a wider context. After brief descriptions of the PAB regulations and the design of a recent study into the operation of PABs, the chapter describes the profiles of budget holders and the people they employ. It then considers the principal reasons and motives for both parties to enter into this paid caregiving arrangement. The chapter describes the overall patterns of care received by the budget holders and the role of their paid caregivers within these wider patterns of support. Finally, it discusses the outcomes of the PAB from the perspectives of budget holders and their paid carers respectively.

Since the early 1990s, two important reforms have taken place to improve the social security and income situations of informal family carers: in 1993 the long-term care allowance was introduced and in 2002 a universal childcare allowance replaced the former parental leave benefit. Together with reforms in the social security system, it could be argued that the Austrian welfare state is beginning to assign a higher value to informal family care. This chapter addresses several questions. First, do these reforms represent a move towards ‘caregiving parity’ for informal carers? Second, have the arguments in favour of these new payments for care focused on their role in extending freedom of choice? Third, do informal carers and/or the people they care for actually experience greater freedom of choice now, compared to before the introduction of the cash benefits? The chapter begins by discussing the concepts of ‘caregiving parity’ and ‘freedom of choice’. It then examines the new childcare and long-term care allowances to see whether these reforms do indeed reflect a new approach to supporting care arrangements, based on these concepts. The chapter concludes that, although the Austrian care system does show some trends that challenge the male breadwinner model, it is still far from reflecting a new model of care.

This chapter presents a critical review of the care literature, and suggests that there is a need to embrace complexity in grappling with understandings of care. It critiques the traditional polarisations upheld in the literature around care/abuse and carer/caree. The chapter develops a case for care and abuse to be understood as potentially coexisting components of family interactions. The first section focuses on the language and labels of care relationships, questioning the way that the literature has traditionally polarised aspects of care – particularly around the positions of care/abuse and carer/caree. The chapter concludes with a summary of how social constructionist attention to language can further understandings of family care. It develops theoretical assertions regarding themes of care and abuse, alongside the significance of language in research, professional practice, and day-to-day communication. The chapter highlights the importance of understanding how care relationships are put into words and discoursed into being.

This chapter provides an overview of different models of financial support for informal carers (that is, the kin and close friends) of older people. These models reflect the institutional and cultural traditions of the broader societies and welfare states of which they are a part. The chapter first argues that the issue of paying informal carers needs to be understood from several different policy perspectives. It then outlines four models of providing financial support for informal care, illustrated with examples from specific countries. The different models are evaluated against a series of questions relating to sustainability; the implications for economic well-being and concepts of citizenship that derive from labour market participation; the balance between individual, family, and social rights and responsibilities; and the quality of care. Finally, the chapter argues that, in order to address these wider policy issues, a number of additional measures to paying informal carers of older people are required.

This chapter reviews the literature on childhood responsibilities, informal care, and young caregiving and introduces key theoretical perspectives, such as the social construction of childhood and youth, the ethic of care, and risk and resilience discourses, which are drawn on in the analyses of children's and young people's caring responsibilities in families affected by HIV/AIDS. It notes that the significance of the family as both an institution of welfare and for caregiving, exists almost irrespective of the country's familial, social, and sociopolitical structures, although what is expected of family members and what they must do as carers is related to the formal and informal resources available to families. The chapter explains that while there is a high degree of acceptance when adults take on unpaid caring roles, children's and young people's involvement in caring for parents and relatives in the global North and in the global South challenges norms of childhood and youth.

This chapter focuses on the implications of informal care relationships for children as they become young adults. These issues are important for the larger questions about good types of alternative care that benefit the well being and outcomes for children and young people in care and as they prepare to leave care. The chapter considers the advantages and disadvantages of informal care compared to institutional care, the role of government in supporting or prohibiting informal care, and the implications for social policy change to support these traditional arrangements. It also shows how, in recent years, China has more publicly recognized its policy responsibility to these children, as scandals even resulting in children's deaths have gained a profile in public media.

This chapter first attempts to define informal care. It then reviews the sources of stress and satisfaction associated with looking after a dependant in order to understand the milieu of care. Many of the issues relating to carers of cancer patients may well be common to other carers irrespective of the disease the patient is suffering. Lastly, it suggests areas where informal carers and their dependants could be better served by health and social care services.

This chapter reports a study that investigated the changes in care policies in the UK, Canada, Austria, Germany, Sweden and Denmark. The theoretical approach and the selection of countries are first presented. Then, the policy changes in the provision of care are explored. The chapter also provides a broad understanding of transitions in policies on care and their relationships to changes in gendered participation rates on labour markets in different types of welfare regimes. The developments in the six countries under examination show certain similarities in their reorganisation of the provision of long-term care even though they started at different points of departure. The similarities and differences in the developments in the three welfare state regimes are briefly reviewed. These countries introduced formal and informal (semi) wage-paid home-based care allowances, resulting to an increase in informal care giving.

Much of the international literature on health human resources focuses on highly trained, regulated and visible professionals with exclusionary social closure in neo-Weberian terms, such as doctors and nurses. However, researchers and policy makers are now paying more attention to the increasingly important role played by less well-trained, often unregulated, and less visible occupations such as personal support workers. Beyond these categories of paid workers exists another mostly uncharted health human resource: unpaid, little trained, largely unregulated and invisible informal carers. They include the family, friends and neighbours who provide the bulk of everyday care required to support the well being and independence of growing numbers of people facing multiple chronic health and social needs in community settings. Focusing on Canada, this chapter documents the characteristics and contributions of informal carers, and highlights the challenging realities of informal caregiving – both from the perspective of carers and policy makers considering how best to support and encourage unpaid, informal carers without driving up formal health system costs.

This chapter describes on a conceptual/theoretical level what it means to analyse change in informal care work, as well as, in a comprehensive conceptual framework, processes of the formalisation of care work. ‘Care’ is not just a comprehensive, descriptive approach to the analysis of the work of accompanying and educating people and attending to their personal needs. Beyond that, ‘care’ signifies the principle element in welfare production and the welfare-state institutional network. Two new main types of informal care work are reported: semi-formal family-based care work and informal care employment. An overview of the chapters included in this book is presented. It can be stated that the way social care is organised is of basic importance for the production of welfare in European societies.

This chapter investigates the particular form of commodification previously identified as ‘routed wages’. The notion of a partnership between the welfare state and its caring citizens and its citizen care users is, at least notionally, developed. There were two examples of fully commodified ‘informal’ care: the Dutch system which is organised by the Social Insurance Bank and framed by welfare state legislation, and an arrangement organised by a major Catholic charity, Caritas, in Austria, which pays informal carers to care. The different funding regimes for ‘routed wages’ show that, as a result of regulation and whether or not relatives can be paid, they can have various impacts on the lives of the women (and men) caregivers/workers involved. Perhaps, the most important conclusion to draw is that the assumptions of increased independence and empowerment have to be tempered by the form in which the system is delivered.

Japanese society is ageing rapidly. Currently, over 20 per cent of the people in Japan are over 65 years old, and this proportion will grow to 27.8 per cent in 2020. How to cope with this ageing population has been on the agenda as an urgent policy issue since the 1980s, and continuous welfare reforms were made in the 1990s. The most important policy development in this field was the introduction of public Long-term Care Insurance (LTCI) in 2000. This aimed to reduce the heavy burden on the informal care system (the family) and to socialise the care of older people by expanding community-based social care services. Five years on, a review of LTCI is in progress. This chapter explores current issues concerning Japanese social care policy and informal care.

This chapter argues that the marked upswing of interest in informal care in the UK beginning in the 1970s reflected a reaction to some features of the work of Richard Titmuss and ‘traditional social administration’, work that, on examination, reveals a distinctive ‘idealist’ core, unsympathetic to research into familial patterns of caring. It first addresses some of the new work in the history of social welfare. It then examines how it can be built upon to help answer the question, itself sociologically interesting, of why the study of social policy appears to have developed research interests in informal care only since the 1970s. Furthermore, it explicitly reintroduces problems associated with Whig interpretations of the ‘welfare state’ to account for the continuing neglect of material on informal care dating from the end of the nineteenth century.

This chapter examines the system of informal care in West Germany. The findings reveal that the German situation is characterised by the pervasive influence of the values of traditional family politics in West German welfare society and that in many ways caring for disabled and frail dependants magnifies the consequences of gendered divisions between the public and private spheres. It argues that informal care is a contradictory arena which bridges traditional and post-modern life courses and provides the text of interviews with West German informal carers.

This chapter examines the system of informal care in East Germany. It describes five caring situations, three dating from many years before the unification and two which began in the turmoil of that period. It suggests that all these five sets of caring arrangements and strategies were strongly framed by German Democratic Republic (GDR) society. The interviews with welfare personnel and the case studies reveal the hopes and fears East Germans brought by unification.