Health Care innovation and children in poverty: lived experiences of caregivers of children with disabilities in a medicaid-serving ACO

This paper reports the results of a qualitative study of caregivers of children with disabilities enrolled in a Medicaid-serving accountable care organization (ACO). The state of Ohio mandated ACO enrollment for Medicaid-eligible children with disabilities in 34 of 88 counties effective July 2013. Research participants were queried in focus groups and individual interviews about their children’s care experiences and care coordination after enrollment. Most told researchers that they themselves are their children’s care coordinators, and many indicated that resource scarcity is a more pressing problem than fragmented care. Data analysis identified a theme of scarcity and four categories of insufficiency that made caregiver efforts on behalf of their children more difficult: a lack of health services under managed care, resource constraints on other agencies and programs for which families were eligible, a lack of financial support, and a lack of family support. A conceptual framework places ACO care coordination among more upstream factors and identifies ways in which ACOs serving Medicaid populations may wish to address the social determinants of the well-being of children with disabilities. Implications for future research are discussed.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Parental Caregivers' Desires for Lifetime Assistance Planning for Future Supports for Their Children with Intellectual and Developmental Disabilities

Future life planning is a growing concern among families with children with disabilities. This article presents a needs assessment evaluating feasibility of a new model for future life planning for family caregivers, Lifetime Assistance, which will provide ongoing planning and monitoring for individuals with intellectual and developmental disabilities. Using surveys informed by a series of focus groups, data were gathered from older and younger parents in one midwestern state regarding the potential program. Study results indicate that respondents did not feel the current system of support was adequate for planning for their child's future, nor sufficient for monitoring the quality of life for their children in the future. Although almost all families had identified a person to support their family members when they were no longer able to do so, parental caregivers overwhelmingly identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

Services to Families with Dependent Elders

This article analyzes the role of states in providing service and financial incentives for family caregivers to impaired older people. Results from a recent Massachusetts study of family relations of the elderly are reported, focusing on the role of relatives in providing care. Next, critlcal needs of family caregivers are discussed, and major service initiatives to respond to these needs are reviewed. The Massachusetts home care system is used as an example of how services that support family care can be delivered in a comprehensive fashion. Two financial incentive programs (tax incentives and direct payment of caregivers) are then presented. The article concludes with a call for experimental demonstration projects to expand knowledge in this area.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

Hard stories in the workplace

Relationships between family caregivers and professional health care providers typically begin during an intensely painful and stressful time. This article examines the literature on professional attitude and response to suffering with particular emphasis on how exposure to hard stories affects the development and quality of alliances with family caregivers. First person accounts from a qualitative, phenomenological study conducted with mothers of children with acquired physical disabilities are used to illustrate the perspectives of caregivers and the qualities they identify as contributing to competent, meaningful, and mutual relationships that allow for bearing witness to hard stories.     

Effects of Caregiving on Employment and Economic Costs of Chinese Family Caregivers in Canada

A telephone survey with 339 randomly selected Chinese Canadian caregivers examined the employment and economic costs of family caregiving for the elderly. Although the Chinese culture places a strong emphasis on filial obligation, caregiving is not without economic consequences. Caregiver’s age, financial adequacy, and employment, caring for an additional care receiver, and levels of assistance in Activities of Daily Living (ADL), were the predictors for economic costs perceived by family caregivers. Caregiver’s age, caring for an additional care receiver, and care receiver’s financial adequacy were significant predictors for male caregivers. Caregiver’s financial adequacy and higher levels of assistance in ADL were the predictors for female caregivers. Policies to support family caregivers should not just focus on the social aspect, but also the financial needs.     

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.     

Characteristics of LGBT caregivers of older adults: Results from the national Caregiving in the U.S. 2015 survey

Using data from the Caregiving in the U.S. 2015 national survey, we compared characteristics of lesbian, gay, bisexual, and transgender (LGBT) and non-LGBT caregivers of older adults and explored predictors of caregiver strain. LGBT caregivers were younger, more racially/ethnically diverse, and less frequently a spouse/partner compared with their heterosexual counterparts. LGBT caregivers more frequently reported helping with medical nursing tasks and reported higher levels of financial strain. While LGBT identity was not an independent predictor of greater strain, characteristics more frequently reported by LGBT caregivers were, for instance, helping with medical nursing tasks. In addition, LGBT individuals who were children of the older adult were more likely to report higher levels of emotional strain than other relationship types.     

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.     

The Relationship of Adaptive and Maladaptive Behaviour to Social Outcomes for Individuals with Developmental Disabilities

The purpose of this study is to examine social outcomes including social interaction opportunities and self-expression, and how they relate to other quality of life indicators. These indicators include the overall assessment of adaptive skills, and the frequency and severity of challenging behaviour. The social interaction opportunities measured in this research include family contact, hours of habilitation, community outings, hours of employment and hours of education. Self-expression refers to the extent to which the individuals assessed indicated liking and choosing what they do in their everyday lives. The data utilised in this study were obtained from personal interviews from 3781 individuals with developmental disabilities and their caregivers. Interviewers received extensive training prior to conducting the assessments. The results indicate that people with higher adaptive ability had more contact with their families, received fewer hours of habilitation, were reported to participate in community outings more frequently, worked more hours and spent fewer hours in education. These significant correlations, however, were of marginal strength. Overall, the frequency and severity of challenging behaviour were not associated with the social interaction opportunities assessed in this study.     

EDITORIAL

Abstract

Alzheimers Disease is a form of progressive dementia associated with diffuse degeneration of the brain, and has become more common in Hong Kong as the population has aged. Individuals with Alzheimers Disease may experience symptoms such as memory loss, poor judgement, and incontinence. They generally lack selfcare ability and require considerable care as their illness progresses. As the traditional caring function of Chinese families has been eroded, individuals with the disease pose new challenges to their family caregivers. Research using an intensive interview method revealed that family caregivers of people with Alzheimers Disease suffer heavy psychosocial, financial, and physical burdens.     

Toward an equitable, universal caregiver policy: the potential of financial supports for family caregivers

This article describes the fragmented array of financial supports for family caregivers currently provided by the federal government, the states, and private employers-provisions that range from direct payments to tax allowances, dependent-care tax credits, and unpaid leave. It highlights the uneven pattern of supports available to family caregivers of the elderly, the younger physically disabled, and children and adults with mental retardation and developmental disabilities that results from the welfare bias still shaping many current provisions. The article then critiques current policy and examines the potential for more explicit family caregiver financial support policy through pending initiatives of the Clinton Administration.     

The Impact of Formal and Informal Respite Care on Foster,Adoptive, and Kinship Parents Caring for Children Involved in the Child Welfare System

This paper reports the results of a quantitative 42-item survey that explored foster, adoptive, and kinship parents’ (N = 160) utilization of different types of respite services (formal, informal, and a mixture of formal and informal), as well as their impressions of the impact of respite care on aspects of their lives related to family cohesion and stability, caring for their children, and their personal wellbeing. An exploratory cross-sectional, survey design was used to assess both the formal and informal respite care experiences of the foster, adoptive, and kinship caregivers. Two-tailed Fisher’s exact tests were used to examine the relationship between the type of respite received and caregivers’ respite experiences. Findings indicated that parent experiences differed depending on the type of respite services they received. Specifically, parents who used a mixture of formal and informal respite reported positive experiences related to respite more frequently than the other two types of respite groups, while those who received only informal respite reported less benefit than others. Parents who used formal respite (either alone or mixed with informal respite) reported greater stress reduction. The greatest increase in family stability was reported by parents who received a mix of informal and formal respite. While this study revealed clear benefits for families to using both informal and formal respite services, the findings suggest that formal respite care was helpful to parents regardless of whether used alone or in combination with informal care.     

The Limits of Monetizing and Paying for Volunteering in Eldercare: A Behavioral-Economic Approach

The monetary value of informal eldercare in the family and voluntary sector has drawn much attention as it concerns a resource of welfare governments and nonprofit organizations try to activate via cash benefits. Studies addressing the issue in order to assess the economic impact of non-market activities and the willingness to accept financial rewards have largely ignored differences in the utility function of caregivers. Applying a behavioral-economic approach, we report a profound and formerly unobserved distinction between care in the household and non-household care for a family member or in a voluntary framework: whereas caregivers within the household perceive care as a burden and a positive shadow price arises, in the non-household context—and particularly in the volunteering case–care extends well-being and leads to negative shadow prices. The results show that non-market activities can only be measured in monetary terms to a limited extent and contribute to explaining the boundaries of monetary incentive policies.     

Couples Managing the Risk of Financing Long-Term Care

This study examined the complexity of financial long-term care (LTC) decision outcomes among married couples. Supporting the theory of planned behavior, couples reported a range of consensus patterns with their financial LTC intentions and behaviors. Five newly articulated typologies of couples emerged from consensus patterns revealing that couples reported a range of financial LTC intentions and behaviors. More couples reported consensus with their financial LTC behaviors compared to intentions; financial LTC decision outcomes reflected a dynamic and on-going process; and couples were not always in agreement on their financial LTC decision outcomes. Findings reinforce the importance of family practitioners going beyond working with individuals to understanding couple-level planning for financing LTC.     

Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.     

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.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.