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Purpose: The aim is to explore how family relations are affected by societal changes in relation to informal and formal caregiving and self-determination of older adults.

Design/methodology/approach: Care managers (CMs)/social workers (SWs) (N = 124) participated in a comparative vignette study including Japan, South Korea, and Sweden. Systems theory was used.

Findings: Japanese CMs/SWs clearly describe their efforts to create networks in a relational way between formal and informal actors in the community. South Korean CMs/SWs balance between suggesting interventions to support daily life at home or a move to a nursing home, often acknowledging the family as the main caregiver. In Sweden, CMs/SWs highlight the juridical element in meeting the older adult and the interventions offered, and families primarily give social support. Regarding self-determination, the Japanese priority is for CMs/SWs to harmonize within the family and the community. South Korean CMs/SWs express ambivalent attitudes to older adults’ capability for self-determination in the intersection between formal and family care. Swedish CMs/SWs adhere to the older adult’s self-determination, while acknowledging the role of the family in persuading the older adult to accept interventions. The results suggest emerging defamilialization in South Korea, while tendencies to refamilialization are noticed in Japan and Sweden, albeit in different ways.

Research limitations/implications: In translation, nuances may be lost. A focus on changing families shows that country-specific details in care services have been reduced. For future research, perspectives of “care” need to be studied on different levels.

Originality/value: Using one vignette in three countries with different welfare regimes, discussing changing views on families’, communities’ and societal caregiving is unique. This captures changes in policy, influencing re- and defamilialization.

We model the conditions under which parents optimally reallocate time to childcare when an outside agent exogenously restricts the number of hours an employer can demand of a working parent. Theoretically, when the restriction binds, a parent's available time increases. We exploit a series of voluntary and mandated labor-market reforms in South Korea that regulated the statutory and maximum work hours of parents. The government implemented the laws in stages by industry and size of firms. This implementation process generates exogenous variation across families where one or both partners worked at jobs that were or were not affected by the reform. We show the reforms affected work hours and use the predicted changes to investigate the total amount they spent on paid childcare and whether or not they changed the relative use of market and parental care. When fathers get more time (work less), parents spend less money on childcare. A change in mother's work time does not affect expenditures. When parents get more time, they are more likely to spend money on paid childcare for school-age children and more likely to use private academies.

Paid and unpaid care in the home are closely intertwined, but a lack of outside supervision and support often forces paid and unpaid caregivers to negotiate care tasks, responsibilities, and boundaries alone, leading to role conflict and role ambiguity. This analysis draws on two existing qualitative studies of home health aides (S1 n = 27, S2 n = 26) to better understand aides’ perceptions of their relationships with family caregivers by exploring (1) aides’ perceptions of their caretaking role; (2) aides’ perceptions of co-producing care with family members; and (3) factors affecting these perceptions. Data were analyzed through grounded theory and thematic analysis. We found that aides viewed themselves and their clients as the core care “team” and identified three relationship dynamics with family caregivers: independent, where aides and families provided care separately; competitive, where aides and families struggled over control of care tasks; and carative, where aides considered family part of the unit of care. The authors propose strategies, suggested by our participants, for employer agencies to better support paid and unpaid caregivers in negotiating boundaries and co-producing care in the home care setting.

Preferences of both Alzheimer patients and their spouse caregivers are related to a willingness-to-pay (WTP) measure which is used to test for the presence of mutual (rather than conventional unilateral) altruism.

Contingent valuation experiments were conducted in 2000–2002, involving 126 Alzheimer patients and their caregiving spouses living in the Zurich metropolitan area (Switzerland). WTP values for three hypothetical treatments of the demented patient were elicited. The treatment Stabilization prevents the worsening of the disease, bringing dementia to a standstill. Cure restores patient health to its original level. In No burden, dementia takes its normal course while caregiver’s burden is reduced to its level before the disease.

The three different types of therapies are reflected in different WTP values of both caregivers and patients, suggesting that moderate levels of Alzheimer’s disease still permit clear expression of preference. According to the WTP values found, patients do not rank Cure higher than No burden, implying that their preferences are entirely altruistic. Caregiving spouses rank Cure before Burden, reflecting less than perfect altruism which accounts for some 40 percent of their total WTP. Still, this constitutes evidence of mutual altruism.

The evidence suggests that WTP values reflect individuals’ preferences even in Alzheimer patients. The estimates suggest that an economically successful treatment should provide relief to caregivers, with its curative benefits being of secondary importance.

This chapter reviews the existing empirical evidence on how social insurance affects health. Social insurance encompasses programs primarily designed to insure against health risks, such as health insurance, sick leave insurance, accident insurance, long-term care insurance, and disability insurance as well as other programs, such as unemployment insurance, pension insurance, and country-specific social insurance programs. These insurance systems exist in almost all developed countries around the world. This chapter discusses the state-of-the art evidence on each of these social insurance systems, briefly reviews the empirical methods for identifying causal effects, and examines possible limitations to these methods. The findings reveal robust and rich evidence on first-stage behavioral responses (“moral hazard”) to changes in insurance coverage. Surprisingly, evidence on how changes in coverage impact beneficiaries’ health is scant and inconclusive. This lack of identified causal health effects is directly related to limitations on how human health is typically measured, limitations on the empirical approaches, and a paucity of administrative panel data spanning long-time horizons. Future research must be conducted to fill these gaps. Of particular importance is evidence on how these social insurance systems interact and affect human health over the life cycle.

Over 3 million intermittently employed and socially disadvantaged workers receive low wages and limited benefits in diverse long-term care settings and employment arrangements as they try to become a positively valued unified occupation: “direct care workers.” Before this occurs, these workers must overcome negative definitions imposed by three powerful institutions: professional guilds, employers, and states. Care workers’ legitimacy is challenged as nursing labels them “unlicensed, assistive personnel,” defining them in terms of their task relationship to nurses rather than their social relationship to clients. Care workers’ identity is obscured as corporate rationalization nullifies their unique contributions with task unbundling, part-time work, short staffing, and turnover undermining bonding with colleagues and clients. State regulation impedes care workers’ integration, segmenting similar workers under different regulatory regimes, defining workers negatively rather than by their educational attainments and competencies. Overcoming this triple negation will require not just cultural change, but also real structural changes, and can occur only through concerted actions involving coalitions. Labor market intermediaries, public authorities, labor unions, workforce investment boards, philanthropic organizations, and government interagency groups are among those supporting direct care workers’ advancement by strategically coordinating licensing, purchasing, and developing the workforce. Recent federal policy changes and health reform legislation have enhanced recognition of this occupation and are providing new resources for its development.

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

Digital communication supports are a relevant resource for the promotion of citizens’ health literacy. Aware of this reality, in the last quarter of 2019, health professionals of Inpatient Unit A of the Neurology Service of the Coimbra Hospital and University Centre designed the ‘Digital Neuroteca’, which consists of a digital repository with various educational materials in video format, e-books, pamphlets, manuals, infographics, and directories to websites that include credible information, and other content selected by the health team. The selection criteria consider the clarity and credibility of the information in various areas such as risk factors of neurological disease, strategies, and products to support self-care and available resources. Regarding more complex contents, there is a concern to transform them into information accessible to citizens in general. These contents are accessed by patients/caregivers through a tablet/computer, in the presence of the health professional, and can also be sent by email. We got positive results with an increase of satisfaction of those involved – patients, caregivers, and professionals. Health professionals and patients/caregivers reported high satisfaction with the use of this resource given the clarity of the contents, which facilitate understanding and meet their needs, recognizing this tool as an excellent complement to the process of health literacy promotion.

Long-term care has increasingly been subject to mechanisms to manage care in order to control costs and meet institutional demands for cost containment and efficiency. Fundamentally, managed care seeks to limit access to services that are deemed costly, intensive and/or long-term. However, long-term care by definition requires continuity of care across diverse service sectors. In order for managed long-term care to work, these sectors must be well integrated and able to share information about client needs. In this paper we examine the growth of managed care in the long-term care sector. We have collected data from long-term care agencies in adjoining counties (one urban, the other suburban) at three points in time (1997, 1999, and 2001) and are in a position to describe changes in the types of agencies providing long-term care, and the degree of managed care penetration in our sample. We also collected data on administrators’ evaluations of managed care, and their perceptions of the effect of managed care on services and service system integration. We conclude by discussing the future of long-term care.