Informal care substitution: what we don't know can hurt us

Empirical studies focusing on the relationship between formal and informal home care do little to quell the fears of policymakers that expanded access to public home care services will result in the withdrawal of informal support. A close examination of the studies designed to measure the withdrawal of informal support justifies this skepticism. Concerns about the withdrawal of informal care may hinder the introduction of more extensive home care benefits. Researchers have come some distance in trying to address this policy question. The conflicting nature of empirical findings, thus far, demonstrates that the answer depends heavily on how the question is framed, how home care is measured and over what time frame, and what sorts of analytic approaches are used to model the relationship between formal and informal community-based care. This article discusses these issues in greater detail and suggests strategies to address these problems in future research.     

Understanding the pattern of support for the elderly: a comparison between Israel and Sweden

Cross-cultural comparison can offer critical input to analyses of the interplay between formal and informal services for the elderly. Israel and Sweden have very different population structures and represent different points on the spectrum of welfare state development: Sweden has a much higher percentage of elderly, a less traditional family structure, and a much more developed system of public support. In addition, there are thought to be different attitudes toward family ties, with a less family-oriented value structure in Sweden. The natural question is to what extent these differences translate into differences in the extent and nature of family support for the elderly. In this article, family structure, living arrangements, disability rates, and formal and informal sources of help in Sweden and Israel are compared at various points in time. While there is a greater rate of formal service provision in Sweden and some substitution for family support seems to have occurred, informal care has nevertheless remained important. In both countries, residential patterns are critical: it is when the elderly live alone that the formal system has tended to replace the family. The rate of institutionalization is particularly important in determining the rate of disabled elderly requiring care, both formal and informal, in the community.     

Understanding the Pattern of Support for the Elderly:

Cross-cultural comparison can offer critical input to analyses of the interplay between formal and informal services for the elderly. Israel and Sweden have very different population structures and represent different points on the spectrum of welfare state development: Sweden has a much higher percentage of elderly, a less traditional family structure, and a much more developed system of public support. In addition, there are thought to be different attitudes toward family ties, with a less family-oriented value structure in Sweden. The natural question is to what extent these differences translate into differences in the extent and nature of family support for the elderly. In this article, family structure, living arrangements, disability rates, and formal and informal sources of help in Sweden and Israel are compared at various points in time. While there is a greater rate of formal service provision in Sweden and some substitution for family support seems to have occurred, informal care has nevertheless remalned important. In both countries, residential palterns are critical: it is when the elderly live alone that the formal system has tended to replace the family. The rate of institutionalization is particularly important in determining the rate of disabled elderly requiring care, both formal and informal, in the community.     

Trade-Offs Between Formal Home Health Care and Informal Family CareGiving

Using 1994 National Long Term Care Survey data, we estimated logistic regressions of formal and informal home health care use and hours. Home health care use and intensity were differentially impacted by chronic conditions, are higher for Medicaid enrollees and rural or small town residents, but lower for HMO enrollees. Decreases in the probability of home health care use increased informal instrumental activities of daily living (IADL) support four hours and decreased informal activities of daily living (ADL) support eight hours weekly. IADL caregiving substituted for formal care, but ADL caregiving declined with reductions in formal care. Public policy reducing formal home health care access may reduce informal ADL caregiving and increase informal IADL caregiving, producing net declines in support.     

Social Support and the Mental Health of Family Caregivers: Sons and Daughters Caring for Aging Parents in Japan

The prevalence of depressive symptoms among family caregivers has been documented as a serious social problem that could threaten the lives of the elderly and their family caregivers. Social support is considered to be a promising remedy for this problem, although a comprehensive examination of the availability and effectiveness of social support that includes both formal and informal support across multiple dimensions remains limited. In addition, little research has been conducted in Japan on gender differences in stress processes. This study tried to fill those gaps by analyzing recent survey data on sons and daughters who are caring for their elderly parents. The results indicate that sons and daughters have similar levels of formal and informal support for daily care and advice, while there are some gender differences in regard to the availability of other types of social support. It was also found that many types of informal support were significantly associated with a lower caregiver burden for daughters, although this was not necessarily the case for formal support. General instrumental support from formal sources was even associated with higher levels of distress. For sons acting as caregivers, daily caregiving support was the only formal support that was significantly associated with their lower level of distress. Issues of formal support are discussed, in order to reduce the psychological burdens borne by sons and daughters who care for their parents at home.     

Home care for the elderly: the role of relatives,friends and neighbors

We use data from the Survey of Health, Ageing and Retirement in Europe to examine the hours of home care received by the elderly. The existing empirical literature has mostly examined informal home care from children and formal home care. We identify two additional informal home care providers, namely, relatives (other than children) and friends (including neighbors) who provide about 30 % of the hours of informal home care. Our main new empirical finding is that single elderly persons who can rely less on children—and in particular daughters—for their home care receive not only more formal care but also more care from friends and neighbors. These findings suggest that policymakers need to take into account not only home care provision from children but also home care provision from friends and neighbors to obtain accurate projections concerning the increasing costs of formal care programs due to an aging population.     

The Role of Religiosity for Formal and Informal Volunteering in the Netherlands

This paper deals with the question: To what extent do individual religious characteristics, in addition to collective religious characteristics, contribute to the explanation of formal and informal volunteering in the Netherlands at the beginning of the 21st century? To answer this research question, we used the SOCON 2005–2006 dataset. Our main finding concerns informal volunteering: we found that spirituality increases the likelihood of informal volunteering, implying that openness to other people’s needs increases the likelihood of the actual provision of help. There are no other aspects of religiosity that are related to informal volunteering. With regard to formal volunteering we found that, in line with previous research, religious attendance is related positively to formal volunteering, religious as well as secular volunteering, which can be regarded as support for the proposition that religious involvement is important for norm conformity. Further, having a more religious worldview decreases the likelihood of formal volunteering which might show that those with a strong religious worldview are more concerned with the ‘otherworldly’ and less so with what they do in this world. We found no influence of individual religious characteristics on formal volunteering. These results confirm the idea that integration into a religious community plays quite a large role in explaining formal volunteering. Informal volunteering, however, seems to be independent of social networks: it rather depends on individual motivation.     

Theorizing accommodation in supportive home care for older people

This paper examines the issue of what thinking is necessary in order to advance a notion of accommodation in the organization and provision of supportive home care for older people. Accommodation in this context is understood as responsiveness to the singularity of older adults, and we consider how this idea might be used to support opportunities for (independent) living for elders as they age and become frailer. To elaborate the question we draw on examples from our empirical work – ethnographic studies of home care practice undertaken in Canada and Iceland – and consider these examples in light of critical philosophical and social theory, particularly Agamben's (1993) work, The Coming Community. This is a relevant frame through which to consider the potential for the accommodation of the unique needs of older adults in home care because it helps us to problematize the systems through which care is accomplished and the current, dominant terms of relations between individuals and collectives. We argue that giving substance to a notion of accommodation contributes an important dimension to aligned ideas, such as patient-centeredness in care, by working to shift the intentionality of these practices. That is, accommodation, as an orientation to care practices, contests the organizational impulse to carry on in the usual way.     

THE EFFECT OF THE MEDICAID HOME CARE BENEFIT ONLONG-TERM CARE CHOICES OF THE ELDERLY

This paper analyses the impact of Medicaid home care benefits on the probability of nursing home entry and the use of formal and informal home care by disabled elderly remaining in the community. Using data from the National Long-Term Care Survey, I find evidence that Medicaid home care subsidies reduced the probability of nursing home entry among at-risk elderly using formal home care. Among non-in-stitutionalized persons, the subsidy increased the use of formal home care but led to substitution of informal with formal care for services that were non-medical in nature.     

Preservation of self in the nursing home: Contradictory practices within two models of care

Researchers have identified several aspects of nursing home care that interfere with residents' preservation of self. This paper examines how different models of care shape residents' opportunities for preserving a sense of self, adult identity, and agency. Using ethnographic data, I analyze staff practices in two facilities that reflect the contrast between the home and hospital models of long-term care. Previous research on long-term care suggests that an informal, “home-like” approach to care creates more opportunities for residents to preserve a sense of self-identity, whereas a formal, “institutional” approach fosters depersonalizing practices that interfere with residents' psychosocial well-being. My research suggests, however, that both approaches can have contradictory effects on residents' preservation of self. I analyzed patterns of objectification and infantilization that emerged in the social interactions between residents and staff members, as well as practices that mitigated these patterns. This study highlights how a larger culture of ageism and stigma surrounding dependency can become embedded in micro-level practices and underscores the challenges of defining and implementing “good” care.     

Informal care vs. formal services: changes in patterns of care over time

Longitudinal data from a representative sample of community-residing older persons were used to document changes in patterns and costs of care, both informal and formal. It was found that use of formal services was usually in conjunction with, and secondary to, informal care. Limited availability of informal care as well as increased disability raised the odds of using services. Substitution of formal services for informal care was limited and usually temporary. Total costs of community care, including living expenses, were generally less than the cost of nursing home care.     

Informal Care vs. Formal Services

Longitudinal data from a representative sample of community-residing older persons were used to document changes in patterns and costs of care, both informal and formal. It was found that use of formal services was usually in conjunction with, and secondary to, informal care. Limited availability of informal care as well as increased disability raised the odds of using services. Substitution of formal services for informal care was limited and usually temporary. Total costs of community care, including living expenses, were generally less than the cost of nursing home care.     

Are children safer with kin? A comparison of maltreatment risk in out-of-home care

Safety, or the absence of maltreatment, is the primary mandate of the child protection services (CPS) system, both for children living at home and those living away from home. Yet, few research studies have examined maltreatment in out-of-home care due to the low incidence rate and data limitations. This study used statewide administrative data to estimate the association between placement type and experiencing a maltreatment investigation or substantiation in out-of-home care. Over 6% of informal TANF-funded kinship placements experienced an investigation alleging maltreatment by an out-of-home caregiver, compared with just over 3% for formal kinship care and non-relative foster care. However, the monthly risk of maltreatment was lowest in informal kinship care because these placements tended to endure longer before maltreatment occurred. Substantiated maltreatment during an out-of-home placement was rare across all placement types. For both investigated and substantiated maltreatment, risk was highest in the first 3 months.     

Valuing and Integrating Informal Care as a Core Component of Long-Term Care for Older People: A Comparison of Recent Developments in Italy and Spain

The international long-term care (LTC) debate has recently been focusing on how to strengthen home care provision. In this regard, a major role has been played by informal care and how to best integrate it in a holistic care approach. Italy and Spain, usually labeled as “familialist” or “family-based” care models, have been promoting national reforms or actions to support the integration of “informal” actors into the overall LTC system. Through a comparative review of recent trends observed in the two care regimes, this article aims at contributing to improve our cross-national understanding of how LTC is changing across Europe, identifying the basic approaches adopted in Italy and Spain and highlighting both their strengths and drawbacks.     

A part of,yet apart from the team: Substantive membership and belonging of trans and nonbinary athletes

Increasingly, bills and policies prohibit the participation of trans women in competitive sport. The current sociopolitical moment begs the following question: how do interpersonal interactional moments function alongside formal policies and rules to shape trans athletes’ experiences of belonging in sport? Although formal institutional rules govern trans athletes’ ability to compete in sport, informal social sanctioning also denies these athletes equitable, or even de facto, membership in sport. I draw upon two case studies to explore trans athletes’ experiences of membership in elite “women's” sport. I apply Evelyn Nakano Glenn's work on citizenship to consider how trans athletes’ experiences of belonging are influenced by both formal rules imposed by organizations as well as informal social interactions with members of their sporting communities. Inclusion is not synonymous with membership. Trans athletes render visible the ways in which this system functions to contain the diversity of humanity's gender expression.     

Cleaning the ‘People's Home’: The Politics of the Domestic Service Market in Sweden

While there is a substantial scholarly literature depicting the abuses and exploitation of domestic workers in the informal cleaning sector, there is virtually no work that examines conditions in the formal market. This is not an oversight. For many, commodifying domestic labour entrenches gender and economic inequalities; we all should simply clean up after ourselves. We seek to offer a fresh approach: the vital question for those concerned with the women performing this work for pay is not whether to commodify reproductive labour, but rather what form the market will take and what conditions might render it a decent job. In order to make such an assessment, we need to look beyond worst‐case scenarios in the informal sector, and study instead the evolution of the formal market. Only by also examining the content and terms of the work can we address how not to perpetuate inequalities such as the gendered division of labour and its intersection with nationality, race and class. In this article, we analyse the market for household services in Sweden's gender egalitarian social democracy, where a recent tax policy fostered the rapid expansion of a formal market for domestic cleaning. We conclude that domestic cleaning can be a decent job and that there is no inherent contradiction between a market for household services and a social democratic political economy.     

Rural Mothers’ Use of Formal Programs and Informal Social Supports to Meet Family Food Needs: A Mixed Methods Study

Much of the research on low-income families, welfare, and self-sufficiency has focused on urban populations. Further, many of the studies on informal or social support available to and accessed by low-income families addressed needs such as childcare, transportation, money, or housing and did not focus on food issues. This paper focuses on how formal government food assistance programs and informal supports are utilized by rural low-income families as they work to meet their food needs. Drawing on interviews from the multi-state “Rural Families Speak” project, we examine food security in relation to the use of formal and informal supports. Additional analyses address how mothers view and describe their use of support to meet food needs.     

Formal and informal care: discontinuities in a continuum

Informal caregiving by family, friends, neighbors, and self-help groups is being given greater attention as human-service policy seeks to establish a continuum of care knitting together professional efforts and informal helping. However, there are many contradictions in assumptions and perspectives about who should handle problems and in what way. Alternative modes of interaction are outlined to indicate the variety of relationships that have developed in response to differences in assumptions about care. Collaboration between formal and informal helping efforts requires that the informal sector be able to influence professional and organizational expectations regarding responsibility, authority, and credibility.     

Maternal support and adolescent self‐esteem

The relationship between perceived level of maternal support and adolescent well‐being as measured by level of self‐esteem was examined in a sample of 103 black child participants living in urban formal housing and urban informal housing. The study findings support previous research demonstrating a relationship between maternal support and adolescent psychological well‐being. The findings also point to the benefits of an authoritative style of maternal support that is context‐specific. Authoritative or strict maternal parenting in this study, operationalized in terms of an achievement‐oriented maternal support, was significantly related to mental well‐being of children living in informal settlements. Affiliative related maternal support and lack of social isolation were related to increased adolescent well‐being in urban formal housing. Gender differences in perceived maternal support were also evident in the sample. Mother's presence at home was also related to increased psychological well‐being as measured by self‐esteem.     

WORKING CARERS OF OLDER ADULTS

Juggling work and care presents particular challenges to carers and employers. Employers are increasingly under pressure, both from within organizations and from recent government legislation and policy, to develop family-friendly policies to support informal carers in the workplace. Yet existing ‘family-friendly’ schemes and services are still primarily designed for working parents of young children and rarely address the needs of employees who care for older or disabled adults. This paper reports on a study which investigated how working carers and managers in two public sector organizations — a Social Services Department (SSD) and a National Health Service (NHS) Trust — combined their work and caring responsibilities. A multi-method approach was adopted consisting of five phases. First, a profile of the two organizations was established, followed by a short screening questionnaire to all employees to identify who was caring for an older adult over the age of 60. Third, a lengthier postal survey was sent to the 365 carers who had indicated a willingness to participate further. In the fourth and fifth phases, carers and managers were interviewed in depth about their experiences. This paper reports briefly on the survey, but then concentrates in particular on what was said in the interviews about what helps and hinders working carers of older adults. Despite the existence of policies to support carers, our findings suggest that these were far less important than informal support from colleagues and a sympathetic manager in the workplace. Commuting distance between work, home and the older person also posed difficulties for carers, along with inflexible schedules and work overload. Employers are urged to explore these issues further if they are serious about recruiting and retaining employees, and developing the work – life balance agenda to meet the needs of those caring for older and disabled adults.