BiblioVault - Books about Home care services

Care at a Distance

On the Closeness of Technology

Jeannette Pols

Amsterdam University Press, 2012

Often the switch to telecare—technology used to help caretakers provide treatment to their patients off-site—is portrayed as either a nightmare scenario or a much needed panacea for all our healthcare woes. This widely researched study probes what happens when technologies are used to provide healthcare at a distance. Drawing on ethnographic studies of both patients and nurses involved in telecare, Jeannette Pols demonstrates that instead of resulting in less intensive care for patients, there is instead a staggering rise in the frequency of contact between nursing staff and their patients. Care at a Distance takes the theoretical framework of telecare and provides hard data about these innovative care practices, while producing an accurate portrayal of the pros and cons of telecare.

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For Love or Money

Care Provision in the United States

Nancy Folbre

Russell Sage Foundation, 2013

As women moved into the formal labor force in large numbers over the last forty years, care work – traditionally provided primarily by women – has increasingly shifted from the family arena to the market. Child care, elder care, care for the disabled, and home care now account for a growing segment of low-wage work in the United States, and demand for such work will only increase as the baby boom generation ages. But the expanding market provision of care has created new economic anxieties and raised pointed questions: Why do women continue to do most care work, both paid and unpaid? Why does care work remain low paid when the quality of care is so highly valued? How effective and equitable are public policies toward dependents in the United States? In For Love and Money, an interdisciplinary team of experts explores the theoretical dilemmas of care provision and provides an unprecedented empirical overview of the looming problems for the care sector in the United States. Drawing on diverse disciplines and areas of expertise, For Love and Money develops an innovative framework to analyze existing care policies and suggest potential directions for care policy and future research. Contributors Paula England, Nancy Folbre, and Carrie Leana explore the range of motivations for caregiving, such as familial responsibility or limited job prospects, and why both love and money can be efficient motivators. They also examine why women tend to specialize in the provision of care, citing factors like job discrimination, social pressure, or the personal motivation to provide care reported by many women. Suzanne Bianchi, Nancy Folbre, and Douglas Wolf estimate how much unpaid care is being provided in the United States and show that low-income families rely more on unpaid family members for their child and for elder care than do affluent families. With low wages and little savings, these families often find it difficult to provide care and earn enough money to stay afloat. Candace Howes, Carrie Leana and Kristin Smith investigate the dynamics within the paid care sector and find problematic wages and working conditions, including high turnover, inadequate training and a “pay penalty” for workers who enter care jobs. These conditions have consequences: poor job quality in child care and adult care also leads to poor care quality. In their chapters, Janet Gornick, Candace Howes and Laura Braslow provide a systematic inventory of public policies that directly shape the provision of care for children or for adults who need personal assistance, such as family leave, child care tax credits and Medicaid-funded long-term care. They conclude that income and variations in states’ policies are the greatest factors determining how well, and for whom, the current system works. Despite the demand for care work, very little public policy attention has been devoted to it. Only three states, for example, have enacted paid family leave programs. Paid or unpaid, care costs those who provide it. At the heart of For Love and Money is the understanding that the quality of care work in the United States matters not only for those who receive care but also for society at large, which benefits from the nurturance and maintenance of human capabilities. As care work gravitates from the family to the formal economy, this volume clarifies the pressing need for America to fundamentally rethink its care policies and increase public investment in this increasingly crucial sector.

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Helping Yourself Help Others

A Book for Caregivers

Rosalynn Carter

University of Arkansas Press, 2023

“A practical, highly informative, and sympathetic guide.”
—The Washington Post

Most of us will become a caregiver at some point in our lives. And we will assume this role for the most personal reason imaginable: wanting to help someone we love. But we may not know where to start, and we may be afraid of losing ourselves in this daunting task.

Former first lady Rosalynn Carter, a longtime advocate for caregivers and mental health, knows firsthand the challenges of this labor of love. Drawing upon her own experiences and those of hundreds of others whose stories she gathered over many decades, Mrs. Carter offers reassuring, practical advice to any caregiver who has faced stress, anxiety, or loneliness.

Helping Yourself Help Others, reissued here with a new foreword, is as relevant as ever. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront. Filled with empathy, this encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role.

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Just Care

Messy Entanglements of Disability, Dependency, and Desire

Akemi Nishida

Temple University Press, 2022

Just Care is Akemi Nishida’s thoughtful examination of care injustice and social justice enabled through care. The current neoliberal political economy has turned care into a business opportunity for the healthcare industrial complex and a mechanism of social oppression and control. Nishida analyzes the challenges people negotiate whether they are situated as caregivers, receivers, or both. Also illuminated is how people with disabilities come together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change.

The structure of care, Nishida writes, is deeply embedded in and embodies the cruel social order—based on disability, race, gender, migration status, and wealth—that determines who survives or deteriorates. Simultaneously, many marginalized communities treat care as the foundation of activism. Using interviews, focus groups, and participant observation with care workers and people with disabilities, Just Care looks into lives unfolding in the assemblage of Medicaid long-term care programs, community-based care collectives, and bed activism. Just Care identifies what care does, and asks: How can we activate care justice or just care where people feel cared affirmatively and care being used for the wellbeing of community and for just world making?

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Making Their Days Happen

Paid Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities

Lisa I. Iezzoni

Temple University Press, 2022

Most Americans—even those with significant disability—want to live in their homes and communities. Unpaid family members or friends often work as “informal” caregivers, helping those who need assistance— and many feel they have no option but to serve. In contrast, paid personal assistance services workers (PAS) provide a lifeline to those consumers with complex needs and limited social networks. However, there is a crisis looming in the increasing needs for paid PAS and the limited available PAS workforce.

Making Their Days Happen explores disability, health, and civil rights, along with relevant federal and state labor policies related to personal assistance services. Lisa Iezzoni addresses the legal context of paid PAS as well as financing mechanisms for obtaining home-based personal assistance. She also draws upon interviews she conducted with paid PAS consumers and PAS workers to explore PAS experiences and their perspectives about their work.

Offering recommendations for improving future experiences of PAS consumers and providers, Iezzoni emphasizes that people with disabilities want to be a part of society, and PAS workers who do this low-wage work find satisfaction in helping them achieve their goals.

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Who Will Care For Us?

Long-Term Care and the Long-Term Workforce

Paul Osterman

Russell Sage Foundation, 2017

The number of elderly and disabled adults who require assistance with day-to-day activities is expected to double over the next twenty-five years. As a result, direct care workers such as home care aides and certified nursing assistants (CNAs) will become essential to many more families. Yet these workers tend to be low-paid, poorly trained, and receive little respect. Is such a workforce capable of addressing the needs of our aging population? In Who Will Care for Us? economist Paul Osterman assesses the challenges facing the long-term care industry. He presents an innovative policy agenda that reconceives direct care workers’ work roles and would improve both the quality of their jobs and the quality of elder care.

Using national surveys, administrative data, and nearly 120 original interviews with workers, employers, advocates, and policymakers, Osterman finds that direct care workers are marginalized and often invisible in the health care system. While doctors and families alike agree that good home care aides and CNAs are crucial to the well-being of their patients, the workers report poverty-level wages, erratic schedules, exclusion from care teams, and frequent incidences of physical injury on the job. Direct care workers are also highly constrained by policies that specify what they are allowed to do on the job, and in some states are even prevented from simple tasks such as administering eye drops.

Osterman concludes that broadening the scope of care workers’ duties will simultaneously boost the quality of care for patients and lead to better jobs and higher wages. He proposes integrating home care aides and CNAs into larger medical teams and training them as “health coaches” who educate patients on concerns such as managing chronic conditions and transitioning out of hospitals. Osterman shows that restructuring direct care workers’ jobs, and providing the appropriate training, could lower health spending in the long term by reducing unnecessary emergency room and hospital visits, limiting the use of nursing homes, and lowering the rate of turnover among care workers.

As the Baby Boom generation ages, Who Will Care for Us? demonstrates the importance of restructuring the long-term care industry and establishing a new relationship between direct care workers, patients, and the medical system.

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