Caring for the caregivers

National Family Caregivers month is a reminder of the invaluable contributions of family caregivers--contributions that are too often unrecognized when addressing the costs of health care. Unpaid caregivers spend a substantial percentage of each week "helping out," often with older relatives, which requires major changes in their work patterns. It is clear that these caregivers may need help balancing their work and caregiving responsibilities, and it is tempting to want to help them by "taking over" some of the seemingly overwhelming tasks they face daily. Yet, it is also important to recognize the ways in which these tasks may enrich caregivers' own quality of life. Through listening to caregivers, nurses and other health care professionals can better understand the embedded values, goals, joys, and disappointments that connect their lives with those for whom they care.     

Informal Care Intensity and Caregiver Drug Utilization

Providing informal care has negative health consequences for informal caregivers. If these health consequences increase drug utilization among caregivers, estimates of health care savings from informal care—mainly realized through reductions in utilization among care recipients—should consider the increased drug costs incurred by informal caregivers. This paper evaluates whether more intensive informal caregivers have higher drug utilization than less intensive caregivers, controlling for initial health status and other factors. We find that informal care intensity is associated with higher drug consumption. An increase of 10% of total informal care per day is associated with a 0.7% increase in drugs. The small magnitudes indicate that, in this application, it is not important to consider caregiver drug utilization when quantifying the net savings to the health care system of informal care. For individual caregivers, such as those who take multiple drugs per month and/or have no drug coverage, the increase in drug utilization associated with intensive caregiving is likely to be costly.     

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.     

Caregivers' Endorsement of Barriers to Mental Health Services for Children and Youth in Child Welfare

The purpose of this study was to examine the three most common types of caregivers in the child welfare system (birth parents, relative caregivers, and foster parents), an active child welfare case, caregivers' endorsement of barriers to mental health services and mental health service use by caregivers for the children under their care. The sample consisted of 430 dyads (caregivers and their children). Results indicate that an active child welfare case, provider characteristics, and accessibility of services predicted mental health service use for children. Implications for the child welfare and mental health systems are discussed.     

Facilitating Mental Health Service Use for Caregivers: Referral Strategies among Child Welfare Caseworkers

Unmet needs for mental health care are common among caregivers involved in the child welfare system. Although child welfare caseworkers are well positioned to identify service needs and refer caregivers to treatment, little is known about the types of referral strategies used in practice, or their effectiveness for promoting mental health service use. The current study examined child welfare caseworkers' use of different referral strategies and the extent to which these strategies are associated with caregivers' receipt of mental health services within a national sample of child welfare cases. Analyses of the second cohort of families from the National Survey of Child and Adolescent Well-Being suggest that child welfare workers more often use informational strategies for referring caregivers, including suggesting treatment or providing information about treatment options. However, social referral strategies such as providing caregivers with direct assistance in completing applications and making and attending appointments were associated with a greater likelihood of caregivers receiving mental health services. Findings support evidence from other service contexts that service use is facilitated by caseworkers' direct support for arranging services. Implications for research and for child welfare managers and administrators are discussed.     

“Tell Me So That I Can Help You”: Private Information and Privacy Coordination Issues in the Context of Eldercare

In order to provide competent care to aging parents, adult children, and older parents must renegotiate long-standing privacy boundaries that allow caregivers access to parents’ private information. It is reasonable to surmise that caregivers encounter privacy coordination issues when attempting to care for their aging parent. This study utilizes Communication Privacy Management theory to explore what content is considered private and what privacy coordination issues arise in the context of eldercare. Results from 27 in-depth interviews with adult children caring for an aging parent suggest that information concerning parents’ future care, health and well-being, and (in)capabilities were marked private. The findings also detail three disruptions to privacy coordination, including parental caregivers’ ambivalence toward managing parents’ care-related information. Critical implications of the study are discussed, which include how privacy turbulence may be a functional catalyst for boundary recalibration.     

Self-harm among adolescents with developmental disabilities. What are they trying to tell us?

Self-harm behavior exhibited by adolescents with developmental disabilities can be the most challenging behavior for caregivers and health care professionals to address. Past interventions have taken a behavioral approach and focused on functional analysis to guide assessment and treatment. However, self-harm behavior is becoming more recognized as a means of communication. Therefore, it is important for health care professionals and caregivers to listen to adolescents' attempts to communicate and try to understand the meaning of the behavior. Early assessment is crucial to understanding the meaning of the behavior, and early intervention is necessary to prevent escalation or chronicity. Thorough assessment guides interventions and must be implemented in the context of clients' families and social world, and the broader community. Establishment of trusting relationships among adolescents, their families, and health care professionals is imperative. This article discusses self-harm behavior from a psychosocial perspective related to prevalence, onset, purpose, maintenance, and escalation. It also introduces a comprehensive framework to guide assessment and intervention.     

The closing of a social HMO: a case study

A social health maintenance organization (SHMO) integrates acute and long-term care and provides an extended-care benefit for elderly who are at risk of institutionalization. This article reports findings from a case study of the termination of the Group Health SHMO in Minnesota. Interviews were conducted with social workers and at-risk elderly who had been receiving long-term care through the SHMO. The case study examines the post-SHMO transition and the process of replacing SHMO care coordination and longterm care services. Most of the elderly and their caregivers indicated they were "losing ground"--that is, they were paying more or getting less care. Some were paying more for less care. Because they tended to switch to private-pay arrangements and to rely more on informal care, it appears that their care system became much less stable after the closing of the SHMO.     

Role conflicts & coping strategies in caregiving. A symbolic interactionist view

Institutional health care delivery is characterized by interdependency among caregivers and between caregivers and care receivers, which leads to role conflicts. This article examines role conflicts and coping strategies of health care aides who are faced with differing expectations of RNs and residents. Guided by a symbolic interactionist perspective, ethnographic data from 12 RNs, 15 health care aides, and 32 nursing home residents of Italian-Catholic and Anglo-Saxon descent in Toronto, Ontario, Canada, was gathered. Results showed that health care aides differed in how they handled role conflict and their elderly clients' concerns. Health care aides were more likely to reject conflicting role expectations from residents than from RNs.     

Military Caregivers

Military caregivers provide essential services for their veteran or military service members who have serious injuries or illness. Of the estimated 39.8 million Americans who provide care for an adult, 1.1 million care for a post 9/11 veteran or service member. Caregivers may experience greater physical or mental health concerns including stress, depression and/or chronic illness, and have greater financial burden than their non-caregiving counterparts. Policy shifts such as the Caregivers and Veterans Omnibus Health Services Act of 2010 (2018) have created and expanded programs to support caregivers. Practitioners working with injured or ill military service members or veterans and their families should include a comprehensive biopsychosocial assessment of the whole family, utilizing several interventions, such as support groups, peer support, psychoeducational programs, training, individual and family counseling, and/or respite care services, to improve family function and reduce caregiver burden.     

Caregiver perceptions of children in their care and motivations for the care work in children's homes in Ghana: Children of God or children of white men?

The perceptions and motivations that workers have in their work and work environment are important determinants of the quality of work they do. For people who work in residential institutions where children who have lost the care of their parents receive care, these perceptions and motivations become a crucial part in determining the quality of services or care the children are given. This study set out to explore the perceptions and motivations of caregivers in the institutional context in Ghana. Adopting a qualitative, phenomenological approach, data were collected from 35 caregivers in two children's homes in Ghana through participant observations, focus group discussions and in-depth interviews. It emerged that caregivers perceived the children in their care first as children of God and then as children of white men and were predominantly motivated by their religious convictions to keep doing ‘the work of God’. Other motivations included personal life situations and economic aspects of the job. Implications for the workers and children in this environment are discussed.     

Informal caregiving for elders in Sweden: an analysis of current policy developments

In Sweden, care of elderly people is a public responsibility. There are comprehensive public policies and programs providing health care, social services, pensions, and other forms of social insurance. Even so, families are still the major providers of care for older people. In the 1990s, the family was "rediscovered" regarding eldercare in Sweden. New policies and legislative changes were promoted to support family caregivers. The development of services and support for caregivers at the municipal level has been stimulated through the use of national grants. As a result, family caregivers have received more recognition and are now more visible. However, the "Swedish model" of publicly financed services and universal care has difficulty addressing caregivers. Reductions in institutional care and cutbacks in public services have had negative repercussions for caregivers and may explain why research shows that family caregiving is expanding. At the same time, a growing "caregivers movement" is lobbying local and national governments to provide more easily accessible, flexible, and tailored support. In 2009, the Swedish Parliament passed a new law that states: "Municipalities are obliged to offer support to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities." The question is whether the new legislation represents a paradigm shift from a welfare system focused on the individual to a more family-oriented system. If so, what are the driving forces, motives, and consequences of this development for the different stakeholders? This will be the starting point for a policy analysis of current developments in family caregiving of elderly people in Sweden.     

Dysregulated infant temperament and caregiver warmth in Jordanian orphanages: The importance of considering goodness-of-fit

The growing literature on the negative effects of large institutions, has not translated into fundamental shifts in models of care in many parts of the world. The current study was part of a larger initiative to develop foster care as an alternative to institutions in the Hashemite Kingdom of Jordan. The primary goal was to assess the early temperament of institutionalized infants, and to increase our understanding of pathways through which self-regulatory deficits may influence early relationship processes. The primary caregivers for a sample of 46 infants in institutional settings were surveyed, reporting on child functioning and their own beliefs about the relationship and their caregiving behavior. The mean age of the infants was 7 months-of-age, and age at entry into institutional care averaged under 3 months. 46% of children entered care through abandonment and a further 39% from unwed pregnancies. Compared to previously published community samples, these institutionalized infants exhibited more difficult and dysregulated temperaments, and temperament was predictive of caregiver perceptions, expectations for the infant's future, and caregiving behavior. The association between infant regulation and caregiver warmth was found to be mediated by caregiver reported goodness-of-fit with the infant. The current study adds to the literature painting institutionalized infants as a particularly vulnerable group in temperamental domains key to the development of self-regulation, an important underpinning of early mental health. The findings point to the need for staff training and support for children in institutions that consider the importance of goodness-of-fit with caregivers, while underscoring the need for continuing a shift to community-based alternatives.     

Latino caregiver psychosocial factors and health care services for children involved in the child welfare system

Children in the child welfare system have a high prevalence of health problems, making pediatric health service use critical. Latino children represent a growing proportion of the child welfare system, and are at increased risk for health problems. Many have argued that Latino caregivers can provide Latino children with the least disruptive out-of-home placement, but little is known about how caregiver factors might relate to health services utilization or child health status within this population. This study assessed relationships between caregiver psychosocial factors, health care service utilization, and health status for children in the child welfare system. This sample featured 48 Latino caregivers involved in child welfare. Logistic regression models were used to test for relationships between caregiver psychosocial factors and appointment adherence and child health status. Problem-focused coping was positively related to well-child status. No psychosocial factors were related to medical appointment adherence. Case workers may help improve child health outcomes by promoting problem-focused coping skills among Latino caregivers.     

Women Caring for Our Aging in Place Seniors Will Lose Out because of U.S. Immigration Policies

Most older people experiencing chronic health problems, physical disabilities, and memory losses are still able to age in place in their own homes. However, they often need help from others to enjoy healthy, active, and independent lives. They turn mostly to family members, mainly women and usually their daughters, daughters-in-law or wives. But caring for frail elders has become more demanding and complex, and these family members often feel physically and emotionally overwhelmed and burnt out. They concede that they cannot do it alone. Others find it more difficult to hold full-or even part-time jobs. Hiring home (direct) care workers to assist their loved ones can be an effective solution to ease their caregiving responsibilities. However, these personal care aides, home health aides, and nursing assistants are already in short supply. Moreover, going forward the aging of the baby boomer population will result in an even greater demand for their services even as these jobs are often unattractive to American-born workers and turnover is high. This country’s immigration policies will make it even more difficult for women caring for older persons to hire these workers. Over 25 percent of home care workers are low-skilled immigrants or foreign-born. However, the Trump administration’s policies reduce the number of immigrants entering the U.S. and specifically choke off the various pathways that enable low-skilled persons to be hirable in the home care sector. Female caregivers seeking relief from their caregiving responsibilities will lose out unless we remove these immigration barriers.     

Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.     

Parenting stress of grandparents and other kin as informal kinship caregivers: A mixed methods study

Informal kinship caregivers provide the majority of out of home care to children who can no longer safely stay with their biological parent. Yet their parenting challenges are understudied since they are often left out from child welfare and other service systems. This mixed methods study, using a survey and focus groups of grandparent and other kin, examined predictors and sources of parenting stress. Quantitative findings suggested that the kinship family's needs and the caregiver's health and emotional well-being adversely affected parenting stress. Grandparent caregivers experienced an elevated level of parenting stress compared to other kin caregivers. Qualitative findings suggested that financial strains, concerns over children's behavior, navigating service systems and difficult relationships with birth parents contributed to their stress. It appeared that grandparent caregivers faced special challenges due to generational gaps, guilt and concerns over birth parents.