Motives,experiences and strategies of next of kin helping older relatives in the Swedish welfare context: a qualitative study

Dunér A. Motives, experiences and strategies of next of kin helping older relatives in the Swedish welfare context: a qualitative study Int J Soc Welfare 2010: 19: 54–62 © 2008 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare. Next of kin provide the major part of the help given to older people in Sweden, a country where the official goals of formal eldercare are universality and extensive coverage. This qualitative interview study investigates the thoughts and actions of next of kin who provide informal help to older relatives who also receive formal help from the municipal eldercare. Informal help‐giving, in the context of Swedish social policy, was connected with a multiplicity of motives, experiences and strategies. The motives for help‐giving were moral considerations, emotional attachment and ‘out of necessity’. The experiences of next of kin support the idea of ambivalence as a significant feature of informal help‐giving. Different strategies were employed, both active and passive in nature, to manage their situation. The study points out the importance of outlining working forms and methods of collaboration for older persons and their informal and formal networks to lessen the ambivalence experienced by help‐giving next of kin.     

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.     

Unheard voices,unmapped terrain: Care work in long‐term residential care for older people in Canada and Sweden

Daly T, Szebehely M. Unheard voices, unmapped terrain: care work in long‐term residential care for older people in Canada and Sweden This article aims to contribute to comparative welfare state research by analysing the everyday work life of long‐term care facility workers in Canada and Sweden. The study's empirical base was a survey of fixed and open‐ended questions. The article presents results from a subset of respondents (care aides and assistant nurses) working in facilities in three Canadian provinces (n= 557) and across Sweden (n= 292). The workers' experiences were linked to the broader economic and organisational contexts of residential care in the two jurisdictions. We found a high degree of country‐specific differentiation of work organisation: Canada follows a model of highly differentiated task‐oriented work, whereas Sweden represents an integrated relational care work model. Reflecting differences in the vertical division of labour, the Canadian care aides had more demanding working conditions than their Swedish colleagues. The consequences of these models for care workers, for older people and for their families are discussed.     

Support for Carers of Older People: The Roles of the Public and Voluntary Sectors in Sweden

This study examines the support services offered to informal caregivers, whether directly or indirectly, in Sweden over the period of a special investment initiative between 1999 and 2001. Data were collected in a Swedish county using two separate mail questionnaires in 1999 and 2001. The first questionnaire was addressed to each municipality in the region. The second questionnaire was sent to a random sample of voluntary organizations in the area. The findings showed that only the municipalities provided direct forms of relief service, day care and financial support. The voluntary organizations’ support for carers focused on support groups and training as well as services for older care users themselves. There was a significant increase between 1999 and 2001 in the number of municipalities providing information material and training for carers and using professional caregiver consultants. On the one hand, the Swedish public social care system appears to be following the international pattern in paying more attention to informal caregivers and investing in support services for them. On the other hand the findings did not show any growth in support provided by the voluntary organizations. Here Swedish welfare is dissimilar to other European countries, where it is increasingly common for voluntary organizations to play an important role as providers of support for carers.     

Contextualising the ‘Crisis in Aged Care’ in Australia : A Demographic Perspective

Australia's ‘old‐old’ population is growing even faster than the total aged population and despite improved incomes, living conditions, health risk behaviours and health care this will result in a concomitant increase in the numbers of older people with disabilities. This paper examines ABS 2003 survey data on the incidence of disability among older Australians and their need for, and utilisation of, formal and informal care. It uses this as a basis for projecting the incidence of disability among older Australians and the need for informal and formal care up to 2031. These indicate there is a major challenge since the aged care workforce has grown only slowly in Australia and is concentrated in the older working ages presaging a loss of workers through retirement. There needs to be a significant effort put into attracting workers to both the skilled and unskilled parts of the aged care industry.     

Do public services influence patterns of informal care? Informal networks and public home care in three Swedish municipalities

Whether an individual receives home care services depends on two factors: the functional disability of the care recipient and the caregiver's gender, when the living arrangements of the care recipient are controlled. Data from this longitudinal study of social networks and home care organization in 3 municipalities in Sweden show that care recipients with a severe disability received more home care services than others. In cases where the main caregiver lives together with the care recipient, the public services are adjusted to the family situation and are independent of the functional disability of the care recipient. Care recipients who live with the primary caregiver receive less formal help than do care recipients who live alone. When the primary caregiver does not live together with the care recipient, the public services are adjusted to the functional disability of the care recipient and are independent of the primary caregiver's gender. Care recipients supported by a male helper received more formal help than care recipients supported by a female helper. Those supported by a female helper received more informal help. Various models of relationships, supplementation and complementation between informal care and public services are discussed. The dependence on public home services is high. Assistance with basic activities of daily living is the first area requiring complementary contributions from the public services. A special type of kin independene was found, related to the function of public services in a modern and gender-equal society. The results provoke a discussion on research design as well as comments on welfare policy and gender equality in the transformation of the welfare state.     

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.     

Young people leaving care in Sweden

The transition from a placement in care to an independent life can be a problematic phase for young people. In Sweden, special care‐leaving services are almost non‐existent. What then happens to young people when they leave a placement in out‐of‐home care? This paper draws on the results of a study in which 16 young care leavers between the ages of 18 and 22 years were interviewed. Telephone interviews were also performed with the young care leavers' parents, social workers, foster carers and institutional staff. The aim of the study was to investigate how young care leavers perceive the transition from care to an independent life. The Swedish welfare model, the prolonged transition to adulthood and the family‐oriented welfare discourse have been used as analytical perspectives. The results show that young care leavers have a pronounced need for social, emotional, practical and financial support. Whilst such support is occasionally provided by foster carers and residential staff, it is seldom given by social services or biological parents. This group is at risk of facing severe problems in the transitional phase from care to independent life, a fact that is not acknowledged by the Swedish welfare system.     

Breakdown of teenage placements in Swedish foster and residential care

This article deals with the problem of breakdown in different types of out‐of‐home care (foster care/residential care) for Swedish teenagers. How often are such placements prematurely terminated against the wishes and intentions of child welfare authorities? Which factors appear to increase or decrease the risk of placement breakdown? The sample consists of a national cohort of 776 youths who started 922 placements during 1991. Every placement was followed in municipal case files for a maximum period of five years. Between 30 and 37% of all placements were prematurely terminated, the exact figure depending on whether a narrow or wide definition of breakdown was applied. The lowest rates of breakdown were found in kinship care and secure units, the highest in non‐kinship foster homes. Teenagers who display antisocial behaviour and/or have mental health problems constitute a high‐risk category for most types of out‐of‐home care, but especially in non‐kinship foster homes. Risk factors in relation to breakdown were analysed in the four main forms of Swedish out‐of‐home care separately (foster homes, privately/publicly run residential care and secure units). The analysis pointed out that risk factors are not the same in all types of care, but antisocial behaviour at time of placement increased the risk in most forms of care. Prior research indicates that placement breakdown is a major problem of child welfare in other countries, and this study found that Sweden is no exception.     

The long arm of the welfare state shortened: Home help in Sweden

Old age care in Sweden expanded greatly in all areas in the 1960s and 1970s. In the 1980s, both institutional and in-home services have retreated. Little substitution between the two kinds of care can be observed. Cutbacks relative to demographic needs, and probably also to actual needs, have occurred, nationally and locally. Home help is analyzed as a metaphor for social services and welfare at large. The strategy has been to give priority to the frailest and oldest clients. Others often have to make do without any services. Also, current recipients of home help services now get different inputs: in the 1980s and earlier, 8 of 10 home help hours were used for homemaking (such as shopping, cooking, cleaning and laundry); in the 1990s about half is used for personal care of the clients.     

Central versus Local Service Regulation: Accounting for Diverging Old-age Care Developments in Sweden and Denmark, 1980–2000

In Sweden and Denmark, the development of old‐age care has followed markedly divergent paths over the past 20 years. In both countries, the level of old‐age care universalism was exceptionally high in the early 1980s. Since then it has dropped sharply in Sweden, while remaining constantly high in Denmark. These divergent trends are clearly irreconcilable with the common image of a coherent Scandinavian welfare state model, and they seem hard to explain with reference to traditional approaches of comparative social policy. This article attempts to account for the divergent developments by focusing on the balance of old‐age care regulation between central and local government. The main finding is that only in Sweden has the central regulation of old‐age care been weak and unspecific. As a consequence, Swedish municipalities have enjoyed sufficient autonomous, regulatory competence to exercise certain local retrenchment measures in times of austerity, thereby eventually causing a nationwide weakening of old‐age care universalism. By contrast, municipalities in Denmark have been much more tightly bound by central state regulations which have prevented them from imposing similar retrenchment measures in the old‐age care sector; consequently, Denmark's level of old‐age care universalism has remained comparatively high.     

Stress experienced by informal caregivers On conflicting demands in everyday life

Stress was defined as a conflict experienced between contradictory demands on the disposition of time and space in the life situation of caregivers. The following questions were asked: are there any family or gender related patterns to be found in the individual expressions of stress experiences? How can differences in stress experiences be explained in terms of work load, sociocultural demands related to gender and family relations, or lack of control in everyday life? What are the effects of a well developed welfare system? What are the differences between a rural and an urban setting and how do different life modes influence sociocultural demands and individual decision latitudes, creating and limiting different contributions of care? How are cultural characteristics reflected in stress experiences? The sample consists of 99 care recipients, all in intense formal care, and the person identified by the care recipient as the person in the informal network who contributed most or took most responsibility in caregiving. Stress experience among main helpers is related to area of living, main helper's gender, kin relation to the care recipient and lack of a shared responsibility within the informal network. Obtaining support in the caring situation reduces the instrumental demands and also the experience of stress. Women in urban areas had less caring commitments in the informal network but also experienced more stress. Help from public home services, however, was not found to reduce the instrumental demands and experiences of stress in all situations.     

From the state to the family or to the market? Consequences of reduced residential eldercare in Sweden

This article analyses the changing roles of the state, family and market in providing care for older people in Sweden, in relation to Scandinavian welfare ideals of universalism and de‐familisation. Since 2000 every fourth residential care bed has disappeared and the increase in homecare services has not compensated for the decline. Instead family care (defined here as help from adult children and other non‐cohabiting family or friends) has increased in all social groups: help by daughters mainly among older people with shorter education and help by sons among those highly educated. Use of privately purchased services has also increased but continues to play a marginal role. Family care remains more common among older people with less education whereas privately purchased services are more common among those with higher education. This dualisation of care challenges universalism, and working‐class daughters continue to be most affected by eldercare cutbacks.     

Managing Work and Care: A Difficult Challenge for Immigrant Families

This paper explores the strategies used by immigrant families to reconcile work and care for young children in Finland, France, Italy and Portugal. Drawing upon interviews with couples or lone parents who have children below age ten, it shows that immigrant families rely on a diversity of work/care strategies. These strategies include extensive delegation of care (mostly to formal or non‐familial informal care), negotiation of care within the nuclear family (both partners sharing the care responsibilities as well as older child care), mother‐centredness (mothers cutting back on working hours), child negligence (leaving children alone) and the superimposition of care upon work (taking children to work). Almost all immigrant families, but especially first‐generation ones, suffer from the absence of close kin networks to support childcare, strong pressure to work and from work (long or atypical hours) and various integration problems such as social isolation, lack of information on services, and problems with housing. However, our findings show that migration patterns, among other factors, have a significant impact on work/care strategies. Highly qualified “professional migration” is more associated with extensive paid delegation (often private and high‐cost), “marriage migration” with mother‐centredness, and “unskilled worker migration” with low‐cost solutions supplemented by workplace care, older child care and negligence. First‐generation unskilled worker migrant families are more exposed to occupational and residential segregation, atypical working hours, low earnings and difficulties in managing work and care for young children. Findings point to the still weak regulatory function of the different welfare states in the protection of these 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.     

Resettlement challenges faced by refugee claimant families in Montreal: lack of access to child care

Adult refugee claimants experience several well‐documented post‐migratory challenges. Little is known about the resettlement process for refugee claimant families with children. This study reports on 75 open‐ended, in‐depth interviews with refugee claimant families in Montreal about their resettlement challenges and their proposed solutions to them. These interviews were conducted with 33 dyads and triads of children and parents attending a paediatric hospital. Experiences accessing formal and informal child care in Montreal were addressed. Subsequently, a comparative policy analysis was conducted on residency eligibility criteria for child care subsidization. Twenty‐eight out of 39 parents (73%) report a lack of informal or formal child care and 15 out of 33 families (39%) propose improving access to formal child care services. They describe a lack of informal child care as a result of reduced social networks, and affordability as a barrier to formal child care services. Refugee claimants are not eligible for subsidized child care in Quebec. A comparative policy analysis within Canada and comparable countries reveals that this situation is not unique to Quebec. However, most provinces and European countries offer child care subsidies to refugee claimants. Refugee claimants should qualify for child care subsidies. Social workers and community organizations should consider their clients' child care needs in designing programmes and services.     

Risk groups for parasuicide – a survey of unselected people who attempt suicide treated in hospital

A registration survey of parasuicide patients seeking hospital care in a defined catchment area was conducted over 24 months (1989-1990). In 1989, 475 individuals registered as residents in the catchment area were given care on 541 occasions, and in 1990, 382 individuals received care on 426 occasions as as a result of parasuicide. The parasuicide rates for the overall population in the catchment area were estimated by means of demographic variables. Parasuicide rates were highest among women 25-39 years old and among men 30-39 years old, i.e., in older age groups than previous studies (from the 1970s) have shown. Parasuicide rates are 3 times as high for single men as for married men and twice as high for single women as for married women. Among single men and women, divorcé(e)s show the highest parasuicide rates, especially in the 15-34 age group. The number of parasuicides among women decreased significantly between 1989 and 1990, which had the effect of evening out the female: male parasuicide ratio (1.28:1). Moreover, for the first time it becomes clear that the Finnish citizens in Sweden, both men and women, show a high risk for parasuicide compared with the Swedish population. These results focus attention on deficient psychic and social wellbeing of Finns in Sweden.     

Beyond benevolence – solidarity and welfare state transition in Sweden

For many decades the Swedish welfare system has served as an archetype of the modern comprehensive welfare state. When economic recession hit Sweden in the beginning of the 1990s, a period of half a century of continuous expansion and reforms in the welfare sector came to an end. The economic downturn enforced rationing measures in most welfare programs and was accompanied by a move towards privatisation of local welfare services and an endeavour to initiate market incentives in the care-giving systems. The focus was increasingly directed on welfare as a financial burden, and the issue of how diminishing resources should be allocated ranked high on the political agenda. In this article we depart from the concept of solidarity and discuss the development of Swedish welfare and welfare opinion. First, we articulate various representations of the concept of solidarity – societal cohesion, individual support for comprehensive welfare and the amount of universality in the provision of care. Second, we describe some fundamental traits in the route taken by Swedish welfare during the 1990s, focusing especially on care of elderly and the demographic challenge of an ageing population. Third, we summarise the evolution of public opinion regarding welfare provision and discuss the determinants of its variations. The article concludes with a discussion of how the (once salient) features of universalism have been affected by the development during the past decade, and the role of popular support in the route ahead for Swedish welfare.     

Swedish Family Policy – Continuity and Change in the Nordic Welfare State Model

The main question addressed in this regional issue is whether or not the Nordic welfare states can still be considered a distinct welfare regime cluster given recent changes, such as the introduction of more private elements into the welfare state. The Nordic welfare states are often described as emphasizing full employment, economic and gender equality, and universal access to cradle‐to‐grave welfare state benefits and services. In the case of Sweden, often pointed to as the model of a social democratic welfare state, such elements remain intact in most aspects of the welfare state, even given the challenges presented by the global neo‐liberal economic paradigm since the 1970s. One way to determine whether or not the Nordic welfare states remain a distinct cluster is to provide an in‐depth examination of various welfare state policies in each Nordic country. To contribute to this analysis, an investigation of family policy in the Swedish context will be provided. Even given recent challenges, such as the introduction of private for‐profit childcare providers and a home care allowance, I argue that Swedish family policy has remained largely social democratic in its underlying goals, and thus acts to support the case for a distinct Nordic welfare regime cluster.     

Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens

In this study, national register data were used to analyse long‐term outcomes at age 25 for around 700 Swedish young people placed in out‐of‐home care during their teens. The sample consisted of 70% of all 13‐ to 16‐year olds who entered out‐of‐home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental‐health problems, teenage parenthood, self‐support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non‐care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long‐term prognosis.