front cover of The Afterlife Is Where We Come From
The Afterlife Is Where We Come From
Alma Gottlieb
University of Chicago Press, 2003
When a new baby arrives among the Beng people of West Africa, they see it not as being born, but as being reincarnated after a rich life in a previous world. Far from being a tabula rasa, a Beng infant is thought to begin its life filled with spiritual knowledge. How do these beliefs affect the way the Beng rear their children?

In this unique and engaging ethnography of babies, Alma Gottlieb explores how religious ideology affects every aspect of Beng childrearing practices—from bathing infants to protecting them from disease to teaching them how to crawl and walk—and how widespread poverty limits these practices. A mother of two, Gottlieb includes moving discussions of how her experiences among the Beng changed the way she saw her own parenting. Throughout the book she also draws telling comparisons between Beng and Euro-American parenting, bringing home just how deeply culture matters to the way we all rear our children.

All parents and anyone interested in the place of culture in the lives of infants, and vice versa, will enjoy The Afterlife Is Where We Come From.

"This wonderfully reflective text should provide the impetus for formulating research possibilities about infancy and toddlerhood for this century." — Caren J. Frost, Medical Anthropology Quarterly
 
“Alma Gottlieb’s careful and thought-provoking account of infancy sheds spectacular light upon a much neglected topic. . . . [It] makes a strong case for the central place of babies in anthropological accounts of religion.  Gottlieb’s remarkably rich account, delivered after a long and reflective period of gestation, deserves a wide audience across a range of disciplines.”—Anthony Simpson, Critique of Anthropology
 
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Ageing with Smartphones in Urban Italy
Care and Community in Milan and Beyond
Shireen Walton
University College London, 2021
An anthropological account of the experience of age and ageing in an inner-city neighborhood in Milan.

This book is an anthropological account of the experience of age and ageing in an inner-city neighborhood in Milan, exploring the relationship between ageing and technology amidst a backdrop of rapid global technological innovation, including the advent of mobile health, smart cities, and a number of wider socioeconomic and technological transformations. Through extensive urban and digital ethnographic research in Milan, Shireen Walton shows how the smartphone has become a “constant companion” in contemporary life, accompanying people throughout the day and through individual and collective experiences. The volume argues that ageing with smartphones in the contemporary urban Italian context is about living with ambiguity, change, and contradiction, as well as developing curiosities about a changing world, our changing selves, and changing relationships with others.
 
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Aging and Health for the US Elderly
A Health Primer for Ages 60 to 90 Years
Harold L. Kennedy
University of Missouri Press, 2021
Seniors today find themselves living in a time when rapid changes in health care delivery have made vital decisions about when and how best to obtain medical treatment difficult and confusing to navigate. At the same time, seniors proportionately need more health care services, have a higher incidence of chronic disease, and take more medications than any other demographic—and yet have the lowest rate of health literacy.

In this short, easy-to-read book designed as a concise but effective healthcare guide, Dr. Harold Kennedy, with more than 60 years of experience practicing medicine, guides readers through the healthcare maze faced by many seniors. While the information in this book is not intended to diagnose or treat ailments, it will give readers a valuable foundation of health literacy, crucial in making good decisions regarding their health and medical care services, and that of their loved ones.

Written expressly to help persons aged 60 years and older, Aging and Health for the US Elderly: A Health Primer for Ages 60 to 90 is essential reading for all older Americans. Chapter topics include health risk factors; social determinants of disease; best practices; and up-to-date prevention, surveillance, and wellness, with special chapters tailored specifically for women and for men. Coverage also includes an overview of the U.S. health care system, both its history and the current state of affairs.  Scientific validity of the evidence is provided by more than 180 references.
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AIDS, Intimacy and Care in Rural KwaZulu-Natal
A Kinship of Bones
Patricia C. Henderson
Amsterdam University Press, 2012
Patricia C. Henderson, a South African anthropologist, resided from March 2003 to February 2006 in Okhahlamba, a municipality in the South African province of KwaZulu-Natal. In this book, she recounts her experience among this rural population who lived under the shadow of HIV/AIDS. Spanning a period that starts before antiretrovirals were readily available to a time when these treatments were finally used to care for the ill, this powerful account of a terrible disease and the communities which it affects focuses on the ties between suffering and kinship in South Africa.
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Asylum, Prison, and Poorhouse
The Writings and Reform Work of Dorothea Dix in Illinois
David L. Lightner
Southern Illinois University Press, 1999

This illustrated collection of annotated newspaper articles and memorials by Dorothea Dix provides a forum for the great mid-nineteenth-century humanitarian and reformer to speak for herself.

Dorothea Lynde Dix (1802­–87) was perhaps the most famous and admired woman in America for much of the nineteenth century. Beginning in the early 1840s, she launched a personal crusade to persuade the various states to provide humane care and effective treatment for the mentally ill by funding specialized hospitals for that purpose. The appalling conditions endured by most mentally ill inmates in prisons, jails, and poorhouses led her to take an active interest also in prison reform and in efforts to ameliorate poverty.

In 1846–­47 Dix brought her crusade to Illinois. She presented two lengthy memorials to the legislature, the first describing conditions at the state penitentiary at Alton and the second discussing the sufferings of the insane and urging the establishment of a state hospital for their care. She also wrote a series of newspaper articles detailing conditions in the jails and poorhouses of many Illinois communities.

These long-forgotten documents, which appear in unabridged form in this book, contain a wealth of information on the living conditions of some of the most unfortunate inhabitants of Illinois. In his preface, David L. Lightner describes some of the vivid images that emerge from Dorothea Dix's descriptions of social conditions in Illinois a century and a half ago: "A helpless maniac confined throughout the bitter cold of winter to a dark and filthy pit. Prison inmates chained in hallways and cellars because no more men can be squeezed into the dank and airless cells. Aged paupers auctioned off by county officers to whoever will maintain them at the lowest cost."

Lightner provides an introduction to every document, placing each memorial and newspaper article in its proper social and historical context. He also furnishes detailed notes, making these documents readily accessible to readers a century and a half later. In his final chapter, Lightner assesses both the immediate and the continuing impact of Dix's work.

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Being Ill
On Sickness, Care and Abandonment
Neil Vickers and Derek Bolton
Reaktion Books, 2024
Original, moving, and drawing from a range of fields, an essential exploration of what it means to be ill.
 
A serious illness often changes the way others see us. Few, if any, relationships remain the same. The sick become more dependent on partners and family members, while more distant contacts become strained. The carers of the ill are also often isolated. This book focuses on our sense of self when ill and how infirmity plays out in our relationships with others. Neil Vickers and Derek Bolton offer an original perspective, drawing on neuroscience, psychology, and psychoanalysis as well as memoirs of the ill or their carers to reveal how a sense of connectedness and group belonging can not only improve care but also make societies more resilient to illness. This is an essential book on the experience of major illness.
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Birthing a Better Way
12 Secrets for Natural Childbirth
Kalena Cook
University of North Texas Press, 2010

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Black Skin, White Coats
Nigerian Psychiatrists, Decolonization, and the Globalization of Psychiatry
Matthew M. Heaton
Ohio University Press, 2013

Black Skin, White Coats is a history of psychiatry in Nigeria from the 1950s to the 1980s. Working in the contexts of decolonization and anticolonial nationalism, Nigerian psychiatrists sought to replace racist colonial psychiatric theories about the psychological inferiority of Africans with a universal and egalitarian model focusing on broad psychological similarities across cultural and racial boundaries. Particular emphasis is placed on Dr. T. Adeoye Lambo, the first indigenous Nigerian to earn a specialty degree in psychiatry in the United Kingdom in 1954. Lambo returned to Nigeria to become the medical superintendent of the newly founded Aro Mental Hospital in Abeokuta, Nigeria’s first “modern” mental hospital. At Aro, Lambo began to revolutionize psychiatric research and clinical practice in Nigeria, working to integrate “modern” western medical theory and technologies with “traditional” cultural understandings of mental illness. Lambo’s research focused on deracializing psychiatric thinking and redefining mental illness in terms of a model of universal human similarities that crossed racial and cultural divides.

Black Skin, White Coats is the first work to focus primarily on black Africans as producers of psychiatric knowledge and as definers of mental illness in their own right. By examining the ways that Nigerian psychiatrists worked to integrate their psychiatric training with their indigenous backgrounds and cultural and civic nationalisms, Black Skin, White Coats provides a foil to Frantz Fanon’s widely publicized reactionary articulations of the relationship between colonialism and psychiatry. Black Skin, White Coats is also on the cutting edge of histories of psychiatry that are increasingly drawing connections between local and national developments in late-colonial and postcolonial settings and international scientific networks. Heaton argues that Nigerian psychiatrists were intimately aware of the need to engage in international discourses as part and parcel of the transformation of psychiatry at home.

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Black Women and da ’Rona
Community, Consciousness, and Ethics of Care
Edited by Julia S. Jordan-Zachery and Shamara Wyllie Alhassan
University of Arizona Press, 2023
Rooted in the ways Black women understand their lives, this collection archives practices of healing, mothering, and advocacy during the COVID-19 pandemic.

Recognizing that Black women have been living in pandemics as far back as colonialism and enslavement, this volume acknowledges that records of the past—from the 1918 flu pandemic to the onset of the HIV/AIDS epidemic—often erase the existence and experiences of Black women as a whole. Writing against this archival erasure, this collection consciously recenters the real-time experiences and perspectives of care, policy concerns, grief, and joy of Black women throughout the COVID-19 pandemic.

Nineteen contributors from interdisciplinary fields and diverse backgrounds explore Black feminine community, consciousness, ethics of care, spirituality, and social critique. They situate Black women’s multidimensional experiences with COVID-19 and other violences that affect their lives. The stories they tell are connected and interwoven, bound together by anti-Black gendered COVID necropolitics and commitments to creating new spaces for breathing, healing, and wellness.

Ultimately, this time-warping analysis shows how Black women imagine a more just society, rapidly adapt to changing experiences, and innovate ethics of care even in the midst of physical distancing, which can be instructive for thinking of new ways of living both during and beyond the era of COVID-19.

Contributors
Shamara Wyllie Alhassan
Sharnnia Artis
Keisha L. Bentley-Edwards
Candace S. Brown
Jenny Douglas
Kaja Dunn
Onisha Etkins
Rhonda M. Gonzales
Endia Hayes
Ashley E. Hollingshead
Kendra Jason
Julia S. Jordan-Zachery
Stacie LeSure
Janaka B. Lewis
Michelle Meggs
Nitya Mehrotra
Sherine Andreine Powerful
Marjorie Shavers
Breauna Marie Spencer
Tehia Starker Glass
Amber Walker
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Calling Family
Digital Technologies and the Making of Transnational Care Collectives
Tanja Ahlin
Rutgers University Press, 2023
How do digital technologies shape both how people care for each other and, through that, who they are? With technological innovation is on the rise and increasing migration introducing vast distances between family members--a situation additionally complicated by the COVID-19 pandemic and the requirements of physical distancing, especially for the most vulnerable – older adults--this is a pertinent question. Through ethnographic fieldwork among families of migrating nurses from Kerala, India, Tanja Ahlin explores how digital technologies shape elder care when adult children and their aging parents live far apart. Coming from a country in which appropriate elder care is closely associated with co-residence, these families tinker with smartphones and social media to establish how care at a distance can and should be done to be considered good. Through the notion of transnational care collectives, Calling Family uncovers the subtle workings of digital technologies on care across countries and continents when being physically together is not feasible. Calling Family provides a better understanding of technological relationality that can only be expected to further intensify in the future.
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Cancer and the Politics of Care
Inequalities and Interventions in Global Perspective
Edited by Linda Rae Bennett, Lenore Manderson, and Belinda Spagnoletti
University College London, 2023
An ethnographic examination of the effects of structural inequalities on cancer treatment around the world.
 
Taking an ethnographic approach, the contributors to this book offer new examinations of cancer and its treatment to show how social, economic, race, gender, and other structural inequalities intersect, compound, and complicate health inequalities. Cancer experiences and impacts are explored across eleven countries: Argentina, Brazil, Denmark, France, Greece, India, Indonesia, Italy, Senegal, the United Kingdom, and the United States. The volume engages with specific cancers from the point of primary prevention to screening, diagnosis, treatment (or its absence), and end-of-life care. Cancer and the Politics of Care traverses new theoretical terrain by explicitly critiquing cancer interventions, their limitations and success, the politics that drive them, and their embeddedness in local cultures and value systems. Its diversity and innovation ensure its wide utility among those working in and studying medical anthropology, social anthropology, and other fields at the intersections of social science, medicine, and health equity.
 
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Care and Agency
The Andean Community through the Eyes of Children
Jeanine Anderson
Rutgers University Press, 2024
Andean communities occupy a special place in the history of anthropology, having given shape to fundamental theories of kinship, peasant economics, indigenous medical systems, ritual life and others. Yet children have been shortchanged in research and theory-building. Care and Agency, based on detailed ethnographies of six towns in the province of Yauyos, restores children to a central research position. Contemporary children’s studies emphasize children’s agency and autonomy, and these take surprising forms under the conditions of the rural Andes. At the same time, the book incorporates and extends current discussions of caregiving and its organization in human societies. Children in the Andes are involved in the care of each other, of adults, of animals, of the environment. The activities, sociality, and subjective states of children of different ages, genders, and social strata are variable in ways that make it impossible to speak of a single Andean childhood. The future they face is also uncertain, as the Peruvian nation stumbles through cycles of incompetent government whose common thread is the neglect of small-scale family farming and the welfare of rural populations. A fascinating look at Andean childhood for anyone interested in the lives of children. 
 
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Care and Cure
An Introduction to Philosophy of Medicine
Jacob Stegenga
University of Chicago Press, 2018
The philosophy of medicine has become a vibrant and complex intellectual landscape, and Care and Cure is the first extended attempt to map it. In pursuing the interdependent aims of caring and curing, medicine relies on concepts, theories, inferences, and policies that are often complicated and controversial. Bringing much-needed clarity to the interplay of these diverse problems, Jacob Stegenga describes the core philosophical controversies underlying medicine in this unrivaled introduction to the field.

The fourteen chapters in Care and Cure present and discuss conceptual, metaphysical, epistemological, and political questions that arise in medicine, buttressed with lively illustrative examples ranging from debates over the true nature of disease to the effectiveness of medical interventions and homeopathy. Poised to be the standard sourcebook for anyone seeking a comprehensive overview of the canonical concepts, current state, and cutting edge of this vital field, this concise introduction will be an indispensable resource for students and scholars of medicine and philosophy.
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Care of the Dying Patient
Edited by David A. Fleming & John C. Hagan III
University of Missouri Press, 2010
Although the need for improved care for dying patients is widely recognized and frequently discussed, few books address the needs of the physicians, nurses, social workers, therapists, hospice team members, and pastoral counselors involved in care. Care of the Dying Patient contains material not found in other sources, offering advice and solutions to anyone—professional caregiver or family member—confronted with incurable illness and death. Its authors have lectured and published extensively on care of the dying patient and here review a wide range of topics to show that relief of physical suffering is not the only concern in providing care.

This collection encompasses diverse aspects of end-of-life care across multiple disciplines, offering a broad perspective on such central issues as control of pain and other symptoms, spirituality, the needs of caregivers, and special concerns regarding the elderly. In its pages, readers will find out how to:
  • effectively utilize palliative-care services and activate timely referral to hospice,
  • arrange for care that takes into account patients’ cultural beliefs, and
  • respond to spiritual and psychological distress, including the loss of hope that often overshadows physical suffering.
The authors especially emphasize palliative care and hospice, since some physicians fear that such referrals may be viewed by patients and families as abandonment. They also address ethical and legal risks in pain management and warn that fear of overprescribing pain medication may inadvertently lead to ineffective pain relief and even place the treating team at risk of liability for undertreatment of pain.

While physicians have the ability to treat disease, they also help to determine the time and place of death, and they must recognize that end-of-life choices are made more complex than ever before by advances in medicine and at the same time increasingly important. Care of the Dying Patient addresses some of the challenges frequently confronted in terminal care and points the way toward a more compassionate way of death.
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Changes in Care
Aging, Migration, and Social Class in West Africa
Cati Coe
Rutgers University Press, 2022
Africa is known both for having a primarily youthful population and for its elders being held in high esteem. However, this situation is changing: people in Africa are living longer, some for many years with chronic, disabling illnesses. In Ghana, many older people, rather than experiencing a sense of security that they will be respected and cared for by the younger generations, feel anxious that they will be abandoned and neglected by their kin. In response to their concerns about care, they and their kin are exploring new kinds of support for aging adults, from paid caregivers to social groups and senior day centers. These innovations in care are happening in fits and starts, in episodic and scattered ways, visible in certain circles more than others. By examining emergent discourses and practices of aging in Ghana, Changes in Care makes an innovative argument about the uneven and fragile processes by which some social change occurs.

There is a short film that accompanies the book, “Making Happiness: Older People Organize Themselves” (2020), an 11-minute film by Cati Coe. Available at: https://doi.org/doi:10.7282/t3-thke-hp15
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Chronic Failures
Kidneys, Regimes of Care, and the Mexican State
Ciara Kierans
Rutgers University Press, 2020
Chronic Failures: Kidneys, Regimes of Care and the Mexican State is about Chronic Kidney Disease (CKD) and the relentless search for renal care lived out in the context of poverty, inequality and uneven welfare arrangements. Based on ethnographic research conducted in the state of Jalisco, this book documents the routes uninsured Mexican patients take in order to access resource intensive biotechnical treatments, that is, different modes of dialysis and organ transplantation. It argues that these routes are normalized, bureaucratically, socially and epidemiologically, and turned into a locus for exploitation and profit.  Without a coherent logic of healthcare access, negotiating regimes of renal care has catastrophic consequences for those with the least resources to expend in that effort. In carrying both the costs and the burden of care, the practices of patients without entitlement offer a critical vantage point on the interplay between the state, markets in healthcare and the sick body.
 
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Close to Me, but Far Away
Living with Alzheimer's
Burton M. Wheeler
University of Missouri Press, 2001

Each day Burt Wheeler is plagued by the same question. When did it happen? If he could pinpoint the beginning, then he might begin to make peace with himself. He vividly remembers when the doctor diagnosed Kee, his loving wife of over fifty years, with "Alzheimer-type dementia." But, as hard as he tries, it's impossible for him to determine when his wife's dementia started. He remembers her bout with depression, but that, he thinks, was surely due to her breast cancer. There was their dream vacation to Greece when Kee seemed so tired and indifferent. There were the unopened books, when reading had always been such a source of pleasure to her. And, he recalls, the gradual personality changes with friends, and even with family.

Wheeler started writing this book as a form of self-therapy when he found himself thrust into the role of caretaker to his wife--a role for which he felt unprepared. He wrote in memory of the very special woman his wife had been—a wonderful mother, charming and gracious, as well as a deeply respected psychotherapist. She was also his best friend, and he loved her. So, to some degree, this is a love story—a story about two people who have shared life's ups and downs for over fifty years. It's also about commitment.

In Close to Me, but Far Away, Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humor, humor achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

Alzheimer's is a terrifying and horrible disease, as much for loved ones as for the patient. Those who are caregivers or friends of Alzheimer's patients or caregivers will empathize with Burton Wheeler's story. And some might receive comfort from his words or learn from him. Because Alzheimer's is a disease that could affect anyone, Close to Me, but Far Away is a story that should be read by all.

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Commodities of Care
The Business of HIV Testing in China
Elsa L. Fan
University of Minnesota Press, 2021

How global health practices can end up reorganizing practices of care for the people and communities they seek to serve 

Commodities of Care examines the unanticipated effects of global health interventions, ideas, and practices as they unfold in communities of men who have sex with men (MSM) in China. Targeted for the scaling-up of HIV testing, Elsa L. Fan examines how the impact of this initiative has transformed these men from subjects of care into commodities of care: through the use of performance-based financing tied to HIV testing, MSM have become a source of economic and political capital. 

In ethnographic detail, Fan shows how this particular program, ushered in by global health donors, became the prevailing strategy to control the epidemic in China in the late 2000s. Fan examines the implementation of MSM testing and its effects among these men, arguing that the intervention produced new markets of men, driven by the push to meet testing metrics. 

Fan shows how men who have sex with men in China came to see themselves as part of a global “MSM” category, adopting new selfhoods and socialities inextricably tied to HIV and to testing. Wider trends in global health programming have shaped national public health responses in China and, this book reveals, have radically altered the ways health, disease, and care are addressed. 

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Conflicts of Care
Hospital Ethics Committees in the USA and Germany
Helen Kohlen
Campus Verlag, 2009

Since the 1980s, increasing numbers of hospitals in the United States have formed internal ethics committees to help doctors and other health care professionals deal with complicated ethical questions, especially those regarding the end of a life. But it is only in recent years that German hospitals have followed suit. In Conflicts of Care, Helen Kohlen offers the first comprehensive look at the origin and function of these committees in German hospitals. Using a mix of archival research, participant observation, and interviews, Kohlen explores the debates that surrounded their formation and the functions they have taken on since their creation.

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Continuing Care in a Community Hospital
Harold N. Willard and Stanislav V. Kasl
Harvard University Press, 1972
In this report on one of the first continuing care departments in the country, Dr. Harold Willard describes how he set up and directed a program in Thayer Hospital, Waterville, Maine, to provide the personnel and services necessary for improved care of patients with chronic illnesses. The community hospital, he maintains, must be the center for developing methods for health maintenance and care of the chronically ill. Two chapters by Dr. Stanislav Kasl provide a theoretical background for continuing care and discuss the importance of information from the behavioral sciences in the development and operation of continuing care programs.
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Covenant of Care
Newark Beth Israel and the Jewish Hospital in America
Kraut, Alan M
Rutgers University Press, 2006
Winner of the 2008 Author's Award from the New Jersey Studies Academic Alliance

Where were you born? Were you born at the Beth? Many thousands of Americans-Jewish and non-Jewish-were born at a hospital bearing the Star of David and named Beth Israel, Mount Sinai, or Montefiore. In the United States, health care has been bound closely to the religious impulse. Newark Beth Israel Hospital is a distinguished modern medical institution in New Jersey whose history opens a window on American health care, the immigrant experience, and urban life. Alan M. and Deborah A. Kraut tell the story of this important institution, illuminating the broader history of voluntary nonprofit hospitals created under religious auspices initially to serve poor immigrant communities. Like so many Jewish hospitals in the early half of the twentieth century, "the Beth" cared not only for its own community's poor and underprivileged, a responsibility grounded in the Jewish traditions of tzedakah ("justice") and tikkun olam ("to heal the world"), but for all Newarkers.

Since it first opened its doors in 1902, the Beth has been an engine of social change. Jewish women activists and immigrant physicians founded an institution with a nonsectarian admissions policy and a welcome mat for physicians and nurses seeking opportunity denied them by anti-Semitism elsewhere. Research, too, flourished at the Beth. Here dedicated medical detectives did path-breaking research on the Rh blood factor and pacemaker development. When economic shortfalls and the Great Depression threatened the Beth's existence, philanthropic contributions from prominent Newark Jews such as Louis Bamberger and Felix Fuld, the efforts of women volunteers, and, later, income from well-insured patients saved the institution that had become the pride of the Jewish community.

The Krauts tell the Beth Israel story against the backdrop of twentieth-century medical progress, Newark's tumultuous history, and the broader social and demographic changes altering the landscape of American cities. Today, the United States, in the midst of another great wave of immigration, once again faces the question of how to provide newcomers with culturally sensitive and economically accessible medical care. Covenant of Care will inform and inspire all those working to meet these demands, offering a compelling look at the creative ways that voluntary hospitals navigated similar challenges throughout the twentieth century.

 
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Crisis for Whom?
Critical Global Perspectives on Childhood, Care, and Migration
Edited by Rachel Rosen, Elaine Chase, Sarah Crafter, Valentina Glockner, and Sayani Mitra
University College London, 2023
A complex and nuanced interdisciplinary exploration of children in migration crises.

Children are central figures in narratives of “migration crises.” They are often depicted as either essentially vulnerable and in need of special protections, or suspiciously adult-like and a threat to national borders. This bilingual book, written in English and Spanish, challenges these simplistic narratives. Drawing on collaborations between young migrants, researchers, artists, and activists, this collection asks new questions about how crises are produced, mobility is controlled, and childhood is conceptualized. Answers to these questions have profound implications for resources, infrastructures, and relationships of care. The chapters offer insights from diverse global contexts, painting a rich and insightful tapestry about child migration. They stress that children are more than recipients of care and that the crises they face are multiple and stratifying, with long historical roots. Readers are invited to understand migration as an act of concern and love and to attend to how the solidarities between citizens and “others,” adults and children, and between children, are understood and forged.
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The Crisis of Care
Affirming and Restoring Caring Practices in the Helping Professions
Susan S. Phillips and Patricia Benner, Editors
Georgetown University Press

By combining stories of care, the reflections of caregiving practitioners, and interpretations of caregiving within a larger social and theoretical framework, this collection identifies the values and skills involved in quality caregiving at the individual level and affirms their importance for reshaping our public caregiving institutions. Contributors from the fields of medicine, nursing, teaching, ministry, sociology, psychotherapy, theology, and philosophy articulate their values, hopes, commitments, and practices both in theoretical essays and in narratives of caregiving that reveal the complexities of skillful practice.

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Curative Violence
Rehabilitating Disability, Gender, and Sexuality in Modern Korea
Eunjung Kim
Duke University Press, 2017
In Curative Violence Eunjung Kim examines what the social and material investment in curing illnesses and disabilities tells us about the relationship between disability and Korean nationalism. Kim uses the concept of curative violence to question the representation of cure as a universal good and to understand how nonmedical and medical cures come with violent effects that are not only symbolic but also physical. Writing disability theory in a transnational context, Kim tracks the shifts from the 1930s to the present in the ways that disabled bodies and narratives of cure have been represented in Korean folktales, novels, visual culture, media accounts, policies, and activism. Whether analyzing eugenics, the management of Hansen's disease, discourses on disabled people's sexuality, violence against disabled women, or rethinking the use of disabled people as a metaphor for life under Japanese colonial rule or under the U.S. military occupation, Kim shows how the possibility of life with disability that is free from violence depends on the creation of a space and time where cure is seen as a negotiation rather than a necessity.
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Daring to Care
American Nursing and Second-Wave Feminism
Susan Gelfand Malka
University of Illinois Press, 2007
Beginning in the 1960s, second-wave feminism inspired and influenced dramatic changes in the nursing profession. Susan Gelfand Malka argues that feminism helped end nursing's subordination to medicine and provided nurses with greater autonomy and professional status. She discusses two distinct eras in nursing history. The first extended from the mid-1960s to the mid-1980s, when feminism seemed to belittle the occupation in its analysis of gender subordination but also fueled nursing leaders' drive for greater authority and independence. The second era began in the mid-1980s, when feminism grounded in the ethics of care appealed to a much broader group of caregivers and was incorporated into nursing education. While nurses accepted aspects of feminism, they did not necessarily identify as feminists. Nonetheless, they used, passed on, and developed feminist ideas that brought about nursing school curricula changes and the increase in self-directed and specialized roles available to caregivers in the twenty-first century.
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Decolonizing Extinction
The Work of Care in Orangutan Rehabilitation
Juno Salazar Parreñas
Duke University Press, 2018
In Decolonizing Extinction Juno Salazar Parreñas ethnographically traces the ways in which colonialism, decolonization, and indigeneity shape relations that form more-than-human worlds at orangutan rehabilitation centers on Borneo. Parreñas tells the interweaving stories of wildlife workers and the centers' endangered animals while demonstrating the inseparability of risk and futurity from orangutan care. Drawing on anthropology, primatology, Southeast Asian history, gender studies, queer theory, and science and technology studies, Parreñas suggests that examining workers’ care for these semi-wild apes can serve as a basis for cultivating mutual but unequal vulnerability in an era of annihilation. Only by considering rehabilitation from perspectives thus far ignored, Parreñas contends, could conservation biology turn away from ultimately violent investments in population growth and embrace a feminist sense of welfare, even if it means experiencing loss and pain.
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Developmental Programming for Infants and Young Children
Volume 1. Assessment and Application
D. Sue Schafer and Martha S. Moersch, Editors
University of Michigan Press, 1981

Developmental Programming for Infants and Young Children: Volume 1 provides detailed instructions for the use of Volume 2: Early Intervention Developmental Profile, including administration and evaluation techniques, scoring and interpretation of results, validity and reliability of findings, and complete item descriptions. To be used with children functioning in the 0-to-36-month developmental age range. Volume 1 includes the scoring sheet (Volume 2).

Developmental Programming for Infants and Young Children

In Five Volumes

Developmental Programming for Infants and Young Children has proven to be an invaluable tool for teachers, therapists, and other professionals who assess and facilitate the development of children functioning primarily in the 0-to-60 month range. The authors address six areas of development: perceptual/fine motor, cognition, language, social/emotional, self-care, and gross motor. Volumes 1, 2, and 3 are designed for use with children functioning in the 0-to-36-month developmental age range, while Volumes 4 and 5 extend assessment and programming guidelines to 5-year (preschool) levels.

Carefully designed and tested by the University of Michigan's Institute for the Study of Mental Retardation and Related Disabilities, all volumes bridge the gap between assessment and program implementation.

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Difficult Attachments
Anxieties of Kinship and Care
Kathryn E. Goldfarb
Rutgers University Press, 2025
Anthropologists have long considered kinship as the basis for social solidarity.  Indeed, the idea that kinship is grounded in positive sociality has found its way into most anthropological accounts and has served as an orienting framework directing decades of scholarly research. But, what about when it is not?  What about instances when kinship is anything but ‘warm and fuzzy’, but is characterized, instead, by neglect, violence, negative affect, or a lack of nurturance and care?  In the three interlinked sections of this volume, the view that kinship is about “solidarity” and “care” is challenged by exploring how kin relations are not only about connection and inclusion, but are also about disconnection, exclusion, neglect, and violence.  Kinship relationships that feel “positive” and “good” take a great deal of perseverance and work; there is nothing “natural” about kinship ties as being based on positive sociality. In these chapters, the contributors take seriously the contingency of kinship relations (the moments when kinship breaks down or is a source of suffering) and how this prompts scholars to develop new theoretical and methodological perspectives.
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Dorothea Dix
New England Reformer
Thomas J. Brown
Harvard University Press, 1998

Dorothea Dix was the most politically engaged woman of her generation, which was itself a remarkable tapestry of activists. An influential lobbyist as well as a paragon of the doctrine of female benevolence, she vividly illustrated the complexities of the "separate spheres" of politics and femininity. Her greatest legislative initiative, a campaign for federal land grants to endow state mental hospitals, assumed a central role in the public land controversies that intertwined with the slavery issues in Congress following the Mexican War. The passage of this legislation in 1854, and its subsequent veto by President Pierce, touched off the most protracted effort to override a veto that had yet taken place.

An activist who disdained the women's rights and antislavery movements, Dix, an old-line Whig, sought to promote national harmony and became the only New England social reformer to work successfully in the lower South right up to the eve of secession. When war broke out, she sought to achieve as Superintendent of Women Nurses the sort of cultural authority she had seen Florence Nightingale win in the same role during the Crimean War. The disastrous failure of one of the most widely admired heroines in the nation provides a dramatic measure of the transformations of northern values during the war.

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Edges of Care
Living and Dying in No Man’s Land
Noam Leshem
University of Chicago Press
A firsthand look at the lives of those who reside in no man’s land—the violence they endure and their immense resilience.
 
“No man’s land” invokes stretches of barren landscape, twisted barbed wire, desolation, and the devastation of war. But this is not always the reality. According to Noam Leshem in Edges of Care, the term also reveals radical abandonment by the state. From the Northern Sahara to the Amazon rainforests, people around the world find themselves in places that have been stripped of sovereign care. Leshem is committed to defining these spaces and providing a more intimate understanding of this urgent political reality.
 
Based on nearly a decade of research in some of the world’s most challenging conflict zones, Edges of Care offers a profound account of abandoned lives and lands, and how they endure and sometimes thrive once left to fend for themselves. Leshem interrogates no man’s land as a site of radical uncaring: abandoned by a sovereign power in a relinquishment of responsibility for the space or anyone inside it. To understand the ramifications of such uncaring, Leshem takes readers through a diverse series of abandoned places, including areas in Palestine, Syria, Colombia, Sudan, and Cyprus. He shows that no man’s land is not empty of life, but almost always inhabited and, in fact, often generative of new modes of being. Beautifully written and evocative, Edges of Care reveals the unexamined complexities and political dynamics hidden within and around places governed by callous indifference.
 
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The Emotional Journey of the Alzheimer's Family
Robert B. Santulli and Kesstan Blandin
Dartmouth College Press, 2015
Alzheimer’s disease is a growing public health crisis. According to the Alzheimer’s Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people—the Alzheimer’s family—undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer’s patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer’s family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.
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Empire of Care
Nursing and Migration in Filipino American History
Catherine Ceniza Choy
Duke University Press, 2003
In western countries, including the United States, foreign-trained nurses constitute a crucial labor supply. Far and away the largest number of these nurses come from the Philippines. Why is it that a developing nation with a comparatively greater need for trained medical professionals sends so many of its nurses to work in wealthier countries? Catherine Ceniza Choy engages this question through an examination of the unique relationship between the professionalization of nursing and the twentieth-century migration of Filipinos to the United States. The first book-length study of the history of Filipino nurses in the United States, Empire of Care brings to the fore the complicated connections among nursing, American colonialism, and the racialization of Filipinos.

Choy conducted extensive interviews with Filipino nurses in New York City and spoke with leading Filipino nurses across the United States. She combines their perspectives with various others—including those of Philippine and American government and health officials—to demonstrate how the desire of Filipino nurses to migrate abroad cannot be reduced to economic logic, but must instead be understood as a fundamentally transnational process. She argues that the origins of Filipino nurse migrations do not lie in the Philippines' independence in 1946 or the relaxation of U.S. immigration rules in 1965, but rather in the creation of an Americanized hospital training system during the period of early-twentieth-century colonial rule. Choy challenges celebratory narratives regarding professional migrants’ mobility by analyzing the scapegoating of Filipino nurses during difficult political times, the absence of professional solidarity between Filipino and American nurses, and the exploitation of foreign-trained nurses through temporary work visas. She shows how the culture of American imperialism persists today, continuing to shape the reception of Filipino nurses in the United States.

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The Essential Eldercare Handbook for Nevada
Kim Boyer
University of Nevada Press, 2014
The senior years can be daunting, for spouses, children, other caregivers, and seniors themselves. Too often a sudden crisis leaves a family unprepared and feeling helpless. Chronic illnesses and limited funds can present difficult and emotional choices regarding care or housing. Rules and resources vary from state to state. Everyone can use help from experienced professionals in understanding them.

Boyer and Shapiro provide Nevada-specific information\--medical, legal, and financial\--on the wide range of problems that arise during the elder years. Case studies show how a typical family copes with troubles such as failing health or financial cares and what options they have. This guide will help any Nevada resident plan for their own senior years and take care of aging parents, spouses, and other loved ones.
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The Ethics of Care
A Feminist Approach to Human Security
Fiona Robinson
Temple University Press, 2011

In The Ethics of Care, Fiona Robinson demonstrates how the responsibilities of sustaining life are central to the struggle for basic human security. She takes a unique approach, using a feminist lens to challenge gender biases in rights-based, individualist approaches.Robinson's thorough and impassioned consideration of care in both ethical and practical terms provides a starting point for understanding and addressing the material, emotional and psychological conditions that create insecurity for people. The Ethics of Careexamines “care ethics” and “security” at the theoretical level and explores the practical implications of care relations for security in a variety of contexts: women's labor in the global economy, humanitarian intervention and peace building, healthcare, and childcare.

Theoretically-innovative and policy-relevant, this critical analysis demonstrates the need to understand the obstacles and inequalities that obstruct the equitable and adequate delivery of care around the world.

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Ethics or the Right Thing?
Corruption and Care in the Age of Good Governance
Sylvia Tidey
HAU, 2021
A sympathetic examination of the failure of anti-corruption efforts in contemporary Indonesia. 

Combining ethnographic fieldwork in the city of Kupang with an acute historical sensibility, Sylvia Tidey shows how good governance initiatives paradoxically perpetuate civil service corruption while also facilitating the emergence of new forms of it. Importing critical insights from the anthropology of ethics to the burgeoning anthropology of corruption, Tidey exposes enduring developmentalist fallacies that treat corruption as endemic to non-Western subjects. In practice, it is often indistinguishable from the ethics of care and exchange, as Indonesian civil servants make worthwhile lives for themselves and their families. This book will be a vital text for anthropologists and other social scientists, particularly scholars of global studies, development studies, and Southeast Asia.
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Exploring Emotion, Care, and Enthusiasm in “Unloved” Museum Collections
Anna Woodham
Arc Humanities Press, 2020
Millions of items are held in museum collections around the world but many museums have very few visitors to their stored collections. These stored objects are certainly not neglected by their professional custodians, and they are loved with a great intensity by some curators and enthusiasts. However, for all but a tiny proportion of the population they have little or no personal meaning. This book goes beyond strategic discussions of access to stores, information enhancement, or collections rationalization and focuses on the emotional potential of these objects. The authors explore how “care” for objects has varied over time and consider who cares for objects that are generally considered to be unsuitable for display and why they care. They also consider how inter-generational and inter-disciplinary dialogue can enhance or engender engagement with "unloved" collections and offer strategies and reflection on interpreting stored collections. This book will be essential reading for scholars, students, and professionals in museums, especially those concerned with curation and collections.
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Faith and Mental Health
Religious Resources for Healing
Harold G. Koenig
Templeton Press, 2005

Dr. Harold Koenig opens a window on mental health, providing an unprecedented source of practical information about the relationship between religion and mental health. He examines how Christianity and other world religions deliver mental health services today, and he makes recommendations, based on research, expertise, and experience, for new programs to meet local needs.

Meticulously researched and documented, Faith and Mental Health includes

  • Research on the relationship between religion and positive emotions, psychiatric illnesses, and severe and persistent mental disorders
  • Ways in which religion has influenced mental health historically, and how now and in the future it can be involved with mental health
  • A comprehensive description and categorization of Christian and non-Christian faith-based organizations that provide mental health resources
  • Resources for religious professionals and faith communities on how to design effective programs

Presenting a combination of the history and current research of mental health and religion along with a thorough examination of faith-based organizations operating in the field, this book is a one-of-a-kind resource for the healthcare community; its valuable research and insights will benefit medical and religious professionals, and anyone concerned with the future of mental health care.

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Fault Lines of Care
Gender, HIV, and Global Health in Bolivia
Heckert, Carina
Rutgers University Press, 2018
The HIV epidemic in Bolivia has received little attention on a global scale in light of the country’s low HIV prevalence rate. However, by profiling the largest city in this land-locked Latin American country, Carina Heckert shows how global health-funded HIV care programs at times clash with local realities, which can have catastrophic effects for people living with HIV who must rely on global health resources to survive. These ethnographic insights, as a result, can be applied to AIDS programs across the globe.
 
In Fault Lines of Care, Heckert provides a detailed examination of the effects of global health and governmental policy decisions on the everyday lives of people living with HIV in Santa Cruz. She focuses on the gendered dynamics that play a role in the development and implementation of HIV care programs and shows how decisions made from above impact what happens on the ground.  
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Food Allergy Advocacy
Parenting and the Politics of Care
Danya Glabau
University of Minnesota Press, 2022

A detailed exploration of parents’ fight for a safe environment for their kids, interrogating how race, class, and gender shape health advocacy 

The success of food allergy activism in highlighting the dangers of foodborne allergens shows how illness communities can effectively advocate for the needs of their members. In Food Allergy Advocacy, Danya Glabau follows parents and activists as they fight for allergen-free environments, accurate labeling, the fair application of disability law, and access to life-saving medications for food-allergic children in the United States. At the same time, she shows how this activism also reproduces the culturally dominant politics of personhood and responsibility, based on an idealized version of the American family, centered around white, middle-class, and heteronormative motherhood.

By holding up the threat of food allergens to the white nuclear family to galvanize political and scientific action, Glabau shows, the movement excludes many, including Black women and disabled adults, whose families and health have too often been marginalized from public health and social safety net programs. Further, its strategies are founded on the assumption that market-based solutions will address issues of social exclusion and equal access to healthcare. 

Sharing the personal experiences of a wide spectrum of people, including parents, support group leaders, physicians, entrepreneurs, and scientists, Food Allergy Advocacy raises important questions about who controls illness activism. Using critical, intersectional feminism to interrogate how race, class, and gender shape activist priorities and platforms, it shows the way to new, justice-focused models of advocacy.

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Forced to Care
Coercion and Caregiving in America
Evelyn Nakano Glenn
Harvard University Press, 2012

The United States faces a growing crisis in care. The number of people needing care is growing while the ranks of traditional caregivers have shrunk. The status of care workers is a critical concern.

Evelyn Nakano Glenn offers an innovative interpretation of care labor in the United States by tracing the roots of inequity along two interconnected strands: unpaid caring within the family; and slavery, indenture, and other forms of coerced labor. By bringing both into the same analytic framework, she provides a convincing explanation of the devaluation of care work and the exclusion of both unpaid and paid care workers from critical rights such as minimum wage, retirement benefits, and workers' compensation. Glenn reveals how assumptions about gender, family, home, civilization, and citizenship have shaped the development of care labor and been incorporated into law and social policies. She exposes the underlying systems of control that have resulted in women—especially immigrants and women of color—performing a disproportionate share of caring labor. Finally, she examines strategies for improving the situation of unpaid family caregivers and paid home healthcare workers.

This important and timely book illuminates the source of contradictions between American beliefs about the value and importance of caring in a good society and the exploitation and devalued status of those who actually do the caring.

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Forget Burial
HIV Kinship, Disability, and Queer/Trans Narratives of Care
Marty Fink
Rutgers University Press, 2021
Finalist for the LGBTQ Nonfiction Award from Lambda Literary

Queers and trans people in the 1980s and early ‘90s were dying of AIDS and the government failed to care. Lovers, strangers, artists, and community activists came together take care of each other in the face of state violence. In revisiting these histories alongside ongoing queer and trans movements, this book uncovers how early HIV care-giving narratives actually shape how we continue to understand our genders and our disabilities. The queer and trans care-giving kinships that formed in response to HIV continue to inspire how we have sex and build chosen families in the present. In unearthing HIV community newsletters, media, zines, porn, literature, and even vampires, Forget Burial bridges early HIV care-giving activisms with contemporary disability movements. In refusing to bury the legacies of long-term survivors and of those we have lost, this book brings early HIV kinships together with ongoing movements for queer and trans body self-determination.
 
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From Crisis to Catastrophe
Care, COVID, and Pathways to Change
Mignon Duffy
Rutgers University Press, 2023
The COVID pandemic has shaken the material and social foundations of the world more than any event in recent history and has highlighted and exacerbated a longstanding crisis of care. While these challenges may be freshly visible to the public, they are not new. Over the last three decades, a growing body of care scholarship has documented the inadequacy of the social organization of care around the world, and the effect of the devaluation of care on workers, families, and communities. In this volume, a diverse group of care scholars bring their expertise to bear on this recent crisis. In doing so, they consider the ways in which the existing social organization of care in different countries around the globe amplified or mitigated the impact of COVID. They also explore the global pandemic's impact on the conditions of care and  its role in exacerbating deeply rooted gender, race, migration, disability, and other forms of inequality.
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Gardening in the Desert
A Guide to Plant Selection and Care
Mary Irish
University of Arizona Press, 2000

Newcomers to the Southwest usually find that their favorite landscape plants aren't suited to the hot, dry climate. Many authors offer advice on adapting plants to the desert; now Mary Irish tells how gardeners can better adapt themselves to the challenge.

Drawing on her experience with public horticulture in the Phoenix metropolitan area, Irish explores the vexations and delights of desert gardening. She offers practical advice on plants and gardening practices for anyone who lives in the Southwest, from El Paso to Palm Springs, Tucson to Las Vegas.

Irish encourages readers who may be new to the desert—or desert dwellers who may be new to gardening—to stop struggling against heat, aridity, and poor soils and instead learn to use and appreciate the wonderful and well-adapted plants native to the desert. She shares information and anecdotes about trees, shrubs, perennials, agaves, cacti, and other plants that make gardening in the Southwest a unique experience, and provides further information about plants from other desert regions that will easily adapt to the Southwest. In addition to descriptions of plants, Irish also offers tips on planting, watering, pruning, and propagation.

For anyone who has struggled to maintain a patch of green or blanched at their water bill after unproductive irrigation, the answer to an attractive landscape may be as close as the desert around you. And for anyone who has bought a catalog guide to desert plants and not known which to choose, this book can set you on the right path. Mary Irish shows how to take heart in available plants of adaptable beauty in a book to enjoy while waiting for the next planting cycle.

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Genomics with Care
Minding the Double Binds of Science
Mike Fortun
Duke University Press, 2023
In Genomics with Care Mike Fortun presents an experimental ethnography of contemporary genomics, analyzing science as a complex amalgam of cognition and affect, formal logics and tacit knowledge, statistics, and ethics. Fortun examines genomics in terms of care—a dense composite of affective and cognitive forces that drive scientists and the relations they form with their objects of research, data, knowledge, and community. Reading genomics with care shows how each resists definition yet is so entangled as to become indistinguishable. Fortun analyzes four patterns of genomic care—curation, scrupulousness, solicitude, and friendship—seen in the conceptual, technological, social, and methodological changes that transpired as the genetics of the 1980s became the genomics of the 1990s, and then the “post-genomics” of the 2000s. By tracing the dense patterns made where care binds to science, Fortun shows how these patterns mark where scientists are driven to encounter structural double binds that are impossible to resolve, and yet are where scientific change and creativity occur.
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Great Expectation
A Father's Diary
Dan Roche
University of Iowa Press, 2008
In Great Expectation, Dan Roche gives a man's perspective on what it means to start and expand a family relatively later in life. Through a series of diary entries in turns humorous, angst ridden, and full of hope and joy, Roche describes his own thoughts and concerns during the nine months of his wife's pregnancy.

With five years of parenting his irrepressible daughter Maeve under his belt, Roche, already forty-five years old, and his wife, Maura, face the prospect of another arrival and the myriad of emotions that come with a second child. From revelling in the joys of pregnancy such as Maura's delight at "having cleavage" and being able to eat whatever she desires; to assuaging the parental anxieties of choosing the right obstetrician, correcting the mistakes one made with the first child, and sending children to college in the future; to navigating the unforeseen, experiencing the unexpected death of a parent, and feeling trepidation toward the thought of having a son, Roche records his emotions with unusual candidness and intimacy.

Reflecting on day-to-day events and their significance in his family’s life together, Roche wonders what he is getting himself into and how much deeper he can immerse himself into parenting. Together, he and his wife face the bittersweet intersections of death and new life, menace and hopefulness. With sincerity and a mature wit, Great Expectation stands as a wise recounting of nine months’ time, with all of its chaos and charms, and offers a fresh perspective for first-time and veteran parents alike.

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Growing Old in a New China
Transitions in Elder Care
Rose K. Keimig
Rutgers University Press, 2021
Growing Old in a New China: Transitions in Elder Care is an accessible exploration of changing care arrangements in China. Combining anthropological theory, ethnographic vignettes, and cultural and social history, it sheds light on the growing movement from home-based to institutional elder care in urban China. The book examines how tensions between old and new ideas, desires, and social structures are reshaping the experience of caring and being cared for. Weaving together discussions of family ethics, care work, bioethics, aging, and quality of life, this book puts older adults at the center of the story. It explores changing relationships between elders and themselves, their family members, caregivers, society, and the state, and the attempts made within and across these relational webs to find balance and harmony. The book invites readers to ponder the deep implications of how and why we care and the ways end-of-life care arrangements complicate both living and dying for many elders.
 
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The Handholder's Handbook
A Guide for Caregivers of People with Alzheimer's or Other Dementias
Teitel, Rosette
Rutgers University Press, 2001
 In a national survey, 19 million Americans said they have a family member with Alzheimer's, and 37 million said they knew someone who had it. But when Rosette Teitel found herself in the role of caregiver to her ailing husband, she could find no books that answered her practical needs: How do you give a 170-pound man a shower? How do you pick him up when he falls? What support networks are available? When is it time to consider a nursing home and how do you find one?
While many books about Alzheimer's disease focus on the illness and the patient, Teitel draws on her own experience to tackle subjects rarely dealt with in other self-help books. She covers topics such as managing the expenses of long-term care through Medicaid, estate planning, and preparing for the patient's death and the loss of someone whose daily survival has been at the center of one's existence. The chapters contain information on diagnosis, treatment, and the progression of the disease; the physical and emotional changes involved with the day-to-day caregiving; support networks; nursing homes; finances; death of the patient; mourning, and life after the patient's death; and interviews with caring children of parents with Alzheimer's disease. In addition, Teitel provides a helpful list of frequently asked questions, scheduling and memory aids, and websites where readers can find resources.
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Health and Health Care In Developing Countries
Sociological Perspectives
Peter Conrad
Temple University Press, 1993

In this seminal collection of articles on health care in the Third World, sociological perspectives are applied to medical issues in revealing ways. Fourteen essays (all but two of which are original to this volume) examine the social production of health, disease, and systems of care throughout the developing world. The volume covers a range of areas—central Africa, Nigeria, Singapore, Taiwan, Indonesia, Nepal, China, United Arab Emirates, Oman, and Mexico—and a broad scope of topics, from emergency care, the AIDS epidemic, and women's health care, to public health programs and national health care policies.

Contributors address the central question of whether health systems in developing areas should emphasize the role of clinical medicine and individual physicians or community and preventive medical resources. The major health problems faced by these societies—inadequate sanitation, infectious disease, high infant-child mortality, and a lack of family planning—indicate the greater need for health educators and public health workers despite many poor nations' desire for Western doctors. Other topics that are examined include the process of seeking medical aid; the relationship between traditional and modern medicines; medical education, hospital care, and communication between doctors and patients in developing countries; and the relevance and application of sociology in Third World settings.

This volume seeks to draw attention to the significance of medical sociology for understanding Third World health problems and to show how examining developing societies may necessitate reframing or modifying some Western sociological notions. In addition, these essays stretch the boundaries of medical sociology to include Third World issues.

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Hidden Heroes
America's Military Caregivers
Rajeev Ramchand
RAND Corporation, 2014
Little has been reported about “military caregivers”—the population of those who care for wounded, ill, and injured military personnel and veterans. This report summarizes the results of a study designed to describe the magnitude of military caregiving in the United States today, as well as to identify gaps in the array of programs, policies, and initiatives designed to support military caregivers.
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Hierarchies of Care
Girls, Motherhood, and Inequality in Peru
Krista E. Van Vleet
University of Illinois Press, 2019
Palomitáy is an orphanage in highland Peru that provides a home for unmarried mothers as young as twelve years old. In their ordinary lives, these young women encounter diverse social expectations and face moral dilemmas. They endeavor to create a ‘good life’ for themselves and their children in a context complicated by competing demands, economic uncertainties, and structured relations of power. Drawing on a year of qualitative on-site research, Krista E. Van Vleet offers a rich ethnography of Palomitáy's young women. She pays particular attention to the moral entanglements that emerge via people's efforts to provide care amid the inequalities and insecurities of today's Peru. State and nonstate participants involved in the women's intimate lives influence how the women see themselves as mothers, students, and citizens. Both deserving of care and responsible for caring for others, the young women must navigate practices interwoven with a range of a racial, gendered, and class hierarchies. Groundbreaking and original, Hierarchies of Care highlights the moral engagement of young women seeking to understand themselves and their place in society in the presence of circumstances that are both precarious and full of hope.
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HIV Exceptionalism
Development through Disease in Sierra Leone
Adia Benton
University of Minnesota Press, 2015

WINNER, 2017 RACHEL CARSON PRIZE, SOCIETY FOR THE SOCIAL STUDIES OF SCIENCE

In 2002, Sierra Leone emerged from a decadelong civil war. Seeking international attention and development aid, its government faced a dilemma. Though devastated by conflict, Sierra Leone had a low prevalence of HIV. However, like most African countries, it stood to benefit from a large influx of foreign funds specifically targeted at HIV/AIDS prevention and care.

What Adia Benton chronicles in this ethnographically rich and often moving book is how one war-ravaged nation reoriented itself as a country suffering from HIV at the expense of other, more pressing health concerns. During her fieldwork in the capital, Freetown, a city of one million people, at least thirty NGOs administered internationally funded programs that included HIV/AIDS prevention and care. Benton probes why HIV exceptionalism—the idea that HIV is an exceptional disease requiring an exceptional response—continues to guide approaches to the epidemic worldwide and especially in Africa, even in low-prevalence settings.

In the fourth decade since the emergence of HIV/AIDS, many today are questioning whether the effort and money spent on this health crisis has in fact helped or exacerbated the problem. HIV Exceptionalism does this and more, asking, what are the unanticipated consequences that HIV/AIDS development programs engender?

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Human Rights and the Care of the Self
Alexandre Lefebvre
Duke University Press, 2018
When we think of human rights we assume that they are meant to protect people from serious social, legal, and political abuses and to advance global justice. In Human Rights and the Care of the Self Alexandre Lefebvre turns this assumption on its head, showing how the value of human rights also lies in enabling ethical practices of self-transformation. Drawing on Foucault's notion of "care of the self," Lefebvre turns to some of the most celebrated authors and activists in the history of human rights–such as Mary Wollstonecraft, Henri Bergson, Eleanor Roosevelt, and Charles Malik–to discover a vision of human rights as a tool for individuals to work on, improve, and transform themselves for their own sake. This new perspective allows us to appreciate a crucial dimension of human rights, one that can help us to care for ourselves in light of pressing social and psychological problems, such as loneliness, fear, hatred, patriarchy, meaninglessness, boredom, and indignity.
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In the Name of Humanity
The Government of Threat and Care
Ilana Feldman and Miriam Ticktin, eds.
Duke University Press, 2010
Scientists, activists, state officials, NGOs, and others increasingly claim to speak and act on behalf of “humanity.” The remarkable array of circumstances in which humanity is invoked testifies to the category’s universal purchase. Yet what exactly does it mean to govern, fight, and care in the name of humanity? In this timely collection, leading anthropologists and cultural critics grapple with that question, examining configurations of humanity in relation to biotechnologies, the natural environment, and humanitarianism and human rights. From the global pharmaceutical industry, to forest conservation, to international criminal tribunals, the domains they analyze highlight the diversity of spaces and scales at which humanity is articulated.

The editors argue that ideas about humanity find concrete expression in the governing work that operationalizes those ideas to produce order, prosperity, and security. As a site of governance, humanity appears as both an object of care and a source of anxiety. Assertions that humanity is being threatened, whether by environmental catastrophe or political upheaval, provide a justification for the elaboration of new governing techniques. At the same time, humanity itself is identified as a threat (to nature, to nation, to global peace) which governance must contain. These apparently contradictory understandings of the relation of threat to the category of humanity coexist and remain in tension, helping to maintain the dynamic co-production of governance and humanity.

Contributors. Arun Agrawal, Joao Biehl , Didier Fassin, Allen Feldman, Ilana Feldman, Rebecca Hardin, S. Lochann Jain, Liisa Malkki, Adriana Petryna, Miriam Ticktin, Richard Ashby Wilson, Charles Zerner

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The Labor of Care
Filipina Migrants and Transnational Families in the Digital Age
Valerie Francisco-Menchavez
University of Illinois Press, 2018
For generations, migration moved in one direction at a time: migrants to host countries, and money to families left behind. The Labor of Care argues that globalization has changed all that. Valerie Francisco-Menchavez spent five years alongside a group of working migrant mothers. Drawing on interviews and up-close collaboration with these women, Francisco-Menchavez looks at the sacrifices, emotional and material consequences, and recasting of roles that emerge from family separation. She pays particular attention to how technologies like Facebook, Skype, and recorded video open up transformative ways of bridging distances while still supporting traditional family dynamics. As she shows, migrants also build communities of care in their host countries. These chosen families provide an essential form of mutual support. What emerges is a fascinating portrait of today's transnational family—sundered, yet inexorably linked over the distances by timeless emotions and new forms of intimacy.
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The Liberalism of Care
Community, Philosophy, and Ethics
Shawn C. Fraistat
University of Chicago Press, 2021
Attention to care in modern society has fallen out of view as an ethos of personal responsibility, free markets, and individualism has taken hold. The Liberalism of Care argues that contemporary liberalism is suffering from a crisis of care, manifest in a decaying sense of collective political responsibility for citizens’ well-being and for the most vulnerable members of our communities. Political scientist Shawn C. Fraistat argues that we have lost the political language of care, which, prior the nineteenth century, was commonly used to express these dimensions of political life.

To recover that language, Fraistat turns to three prominent philosophers—Plato, Jean-Jacques Rousseau, and William Godwin—who illuminate the varied ways caring language and caring values have structured core debates in the history of Western political thought about the proper role of government, as well as the rights and responsibilities of citizens. The Liberalism of Care presents a distinctive vision for our liberal politics where political communities and citizens can utilize the ethic and practices of care to face practical challenges.
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Linked Lives
Elder Care, Migration, and Kinship in Sri Lanka
Michele Ruth Gamburd
Rutgers University Press, 2021
When youth shake off their rural roots and middle-aged people migrate for economic opportunities, what happens to the grandparents left at home? Linked Lives provides readers with intimate glimpses into homes in a Sri Lankan Buddhist village, where elders wisely use their moral authority and their control over valuable property to assure that they receive both physical and spiritual care when they need it. The care work that grandparents do for grandchildren allows labor migration and contributes to the overall well-being of the extended family. The book considers the efforts migrant workers make to build and buy houses and the ways those rooms and walls constrain social activities. It outlines the strategies elders employ to age in place, and the alternatives they face in local old folks’ homes. Based on ethnographic work done over a decade, Michele Gamburd shows how elders face the challenges of a rapidly globalizing world.
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Lucky That Way
Rediscovering My Father's World
Pamela Gerhardt
University of Missouri Press, 2013

“I decide that from now on we should listen to him. His lip may be deflated and his left side paralyzed, but he knows. And he has made terrible mistakes. But he knows. He knows. We are lucky that way.”

Lucky That Way, a nuanced, richly engaging memoir, chronicles the joys and tribulations of a daughter who rediscovers her father as he nears the end of his life. Ernie Gerhardt, an artist and teacher, is largely estranged from his five children, but when he suffers a debilitating stroke, his daughter Pamela must fly to Las Vegas to tend to him. When she arrives to find Ernie newly and shockingly fragile, she is hit by an unexpected wave of tenderness.

As she watches over him in intensive care, she recalls turning points in her family history—the early death of her mother and her father’s turn to heavy drinking--and reflects on the idiosyncrasies that make an imperfect and unique family, on what it means to become old, on what happens when parents are no longer the caregivers but the cared-for, and on how a family copes with their responsibility to the elderly.

Written in a crisp, engaging style, the story is less about the drudgery of finding the right mix of medicines, at-home caregivers, and rehabilitation centers and more about the emotional ramifications of caring for the sick under the weight of sometimes flawed attachments.

People make mistakes, grow old, get sick, and pass on from this world. Lucky That Way examines the irritations and comforts of contemporary family bonds. Gerhardt sifts through the complicated, multi-layered relationships for both wry comedy and high drama and records a string of triumphs and mishaps as Ernie and his five adult children struggle to manage his life and find meaning before their time runs out.

The emerging theme of imperfect humans struggling with life's great mysteries will strike a chord of recognition with the tens of thousands of Baby-Boomers and Gen-Xers who are currently facing similar circumstances with their elderly loved ones. Pamela Gerhardt’s heartfelt story about a family coming to terms with their aging father’s illness and imminent death takes readers on an emotional roller coaster that highlights love, loss, humor, and sadness.

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Managing Madness in the Community
The Challenge of Contemporary Mental Health Care
Kerry Michael Dobransky
Rutgers University Press
 While mental illness and mental health care are increasingly recognized and accepted in today’s society, awareness of the most severely mentally ill—as well as those who care for them—is still dominated by stereotypes.  Managing Madness in the Community dispels the myth.  Readers will see how treatment options often depend on the social status, race, and gender of both clients and carers; how ideas in the field of mental health care—conflicting priorities and approaches—actually affect what happens on the ground; and how, amid the competing demands of clients and families, government agencies, bureaucrats and advocates, the fragmented American mental health system really works—or doesn’t.

In the wake of movies like One Flew Over the Cuckoo’s Nest and Shutter Island, most people picture the severely or chronically mentally ill being treated in cold, remote, and forbidding facilities.  But the reality is very different.  Today the majority of deeply troubled mental patients get treatment in nonprofit community organizations.  And it is to two such organizations in the Midwest that this study looks for answers.  Drawing upon a wealth of unique evidence—fifteen months of ethnographic observations, 91 interviews with clients and workers, and a range of documents—Managing Madness in the Community lays bare the sometimes disturbing nature and effects of our overly complex and disconnected mental health system.

Kerry Michael Dobransky examines the practical strategies organizations and their clients use to manage the often-conflicting demands of a host of constituencies, laws, and regulations.  Bringing to light the challenges confronting patients and staff of the community-based institutions that bear the brunt of caring for the mentally ill, his book provides a useful broad framework that will help researchers and policymakers understand the key forces influencing the mental health services system today.
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Matters of Care
Speculative Ethics in More than Human Worlds
María Puig de la Bellacasa
University of Minnesota Press, 2017

To care can feel good, or it can feel bad. It can do good, it can oppress. But what is care? A moral obligation? A burden? A joy? Is it only human? In Matters of Care, María Puig de la Bellacasa presents a powerful challenge to conventional notions of care, exploring its significance as an ethical and political obligation for thinking in the more than human worlds of technoscience and naturecultures. 

Matters of Care contests the view that care is something only humans do, and argues for extending to non-humans the consideration of agencies and communities that make the living web of care by considering how care circulates in the natural world. The first of the book’s two parts, “Knowledge Politics,” defines the motivations for expanding the ethico-political meanings of care, focusing on discussions in science and technology that engage with sociotechnical assemblages and objects as lively, politically charged “things.” The second part, “Speculative Ethics in Antiecological Times,” considers everyday ecologies of sustaining and perpetuating life for their potential to transform our entrenched relations to natural worlds as “resources.” 

From the ethics and politics of care to experiential research on care to feminist science and technology studies, Matters of Care is a singular contribution to an emerging interdisciplinary debate that expands agency beyond the human to ask how our understandings of care must shift if we broaden the world.  

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Medicine and Religion
Strategies of Care
Shriver
University of Pittsburgh Press, 1980

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Medicine and the Ethics of Care
Diana Fritz Cates and Paul Lauritzen, Editors
Georgetown University Press

In these essays, a diverse group of ethicists draw insights from both religious and feminist scholarship in order to propose creative new approaches to the ethics of medical care. While traditional ethics emphasizes rules, justice, and fairness, the contributors to this volume embrace an "ethics of care," which regards emotional engagement in the lives of others as basic to discerning what we ought to do on their behalf.

The essays reflect on the three related themes: community, narrative, and emotion. They argue for the need to understand patients and caregivers alike as moral agents who are embedded in multiple communities, who seek to attain or promote healing partly through the medium of storytelling, and who do so by cultivating good emotional habits. A thought-provoking contribution to a field that has long been dominated by an ethics of principle, Medicine and the Ethics of Care will appeal to scholars and students who want to move beyond the constraints of that traditional approach.

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Metabolic Homeostasis
A Syllabus for Those Concerned with the Care of Patients
Nathan B. Talbot, Robert H. Richie, and John D. Crawford
Harvard University Press
In extensive research already reported in the authors’ authoritative volume, Functional Endocrinology from Birth through Adolescence, it was shown that the output of an endocrine gland must be evaluated in relation to physiological needs which are changing constantly. Study of the various circumstances of disease in these areas led to the development of a number of procedures which can be used by the physician to assist the body in overcoming or alleviating the abnormality encountered. The present syllabus will be useful in the solution of diagnostic and therapeutic problems.
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More-than-Human Aging
Animals, Robots, and Care in Later Life
Cristina Douglas
Rutgers University Press, 2025
What does later life look like when it is lived in the companionship of other species? Similarly, how do other species age (or not) with humans, and what sort of (a)symmetries, if any, are brought to light around how we understand and think about aging? So far, aging has been investigated in the social sciences in purely human terms. This is the first collection of original work that considers aging as taking place in relation to other species. This volume aims to start a conversation about aging by taking its more-than-human participants seriously – that is, not only as a support for or context of human aging, but also more symmetrically, as agents and subjects in the process of aging. The contributors draw upon richly descriptive ethnographic accounts, including moments of connection between seniors and dogs in a long-term care facility, human care for aging laboratory animals, and robotic companionship in later life. The ethnographies in this volume enrich not only our understanding of more-than-human companionship during the human aging process, but also challenge and urge us to rethink what it means to live later in life in ecologically entangled social and moral worlds.
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My Mother's Hip
Lessons From The World Of Eldercare
Luisa Margolies
Temple University Press, 2004
Some 400,000 hip fractures occur every year, the vast majority among the elderly; all too often these fractures are associated with death or severe disability. After her mother's double hip fracture, Luisa Margolies immersed herself in identifying and coordinating the services and professionals needed to provide critical care for an elderly person. She soon realized that the American medical system is ill prepared to deal with the long-term care needs of our graying society. The heart of My Mother's Hip is taken up with the author's day-to-day observations as her mother's condition worsened, then improved only to worsen again, while her father became increasingly anxious and disoriented. As both a devoted daughter and a skilled anthropologist, Margolies vividly renders her interactions with physicians, nurses, hospital workers, nursing home administrators, the Medicare bureaucracy, home care providers, and her parents. In the Lessons chapter that follows each episode, she discusses in a broader context the weighty decisions that adult children must make on their parents' behalf and the emotional toll their responsibility takes. Here she addresses the complex practical issues that commonly arise in such situations: understanding the consequences of hip fracture and its treatment, preparing health care proxies and advanced directives, enabling elders to remain at home, and the heartbreaking dilemma of prolonging life. Like many adult children, Margolies learned her lessons about eldercare in the midst of crises. This book is intended to ease the information-gathering and decision-making processes for others involved in eldercare.
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Nested Ecologies
A Multilayered Ethnography of Functional Medicine
Rosalynn A. Vega
University of Texas Press, 2023

How functional medicine leverages systems biology and epigenetic science to treat the microbiome and reverse chronic disease.

Each body is a system within a system—an ecology within the larger context of social, political, economic, cultural, and environmental factors. This is one of the lessons of epigenetics, whereby structural inequalities are literally encoded in our genes. But our ecological embeddedness extends beyond DNA, for each body also teems with trillions of bacteria, yeast, and fungi, all of them imprints of our individual milieus. Nested Ecologies asks what it would mean to take seriously our microbial being, given that our internal ecologies are shaped by inequalities embedded in our physical and social environments.

Further, Rosalynn Vega argues that health practices focused on patients’ unique biology inadvertently reiterate systemic inequities. In particular, functional medicine—which attempts to heal chronic disease by leveraging epigenetic science and treating individual microbiomes—reduces illness to problems of “lifestyle,” principally diet, while neglecting the inability of poor people to access nutrition. Functional medicine thus undermines its own critique of the economics of health care. Drawing on novel digital ethnographies and reflecting on her own experience of chronic illness, Vega challenges us to rethink not only the determinants of well-being but also what it is to be human.

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Not-So-Nuclear Families
Class, Gender, and Networks of Care
Hansen, Karen V
Rutgers University Press, 2004

In recent years U.S. public policy has focused on strengthening the nuclear family as a primary strategy for improving the lives of America's youth. It is often assumed that this normative type of family is an independent, self-sufficient unit adequate for raising children. But half of all households in the United States with young children have two employed parents. How do working parents provide care and mobilize the help that they need?

In Not-So-Nuclear Families: Class, Gender, and Networks of Care, Karen V. Hansen investigates the lives of working parents and the informal networks they construct to help care for their children. She chronicles the conflicts, hardships, and triumphs of four families of various social classes. Each must navigate the ideology that mandates that parents, mothers in particular, rear their own children, in the face of an economic reality that requires that parents rely on the help of others. In vivid family stories, parents detail how they and their networks of friends, paid caregivers, and extended kin collectively close the "care gap" for their school-aged children.

Hansen not only debunks the myth that families in the United States are independent, isolated, and self-reliant units, she breaks new theoretical ground by asserting that informal networks of care can potentially provide unique and valuable bonds that nuclear families cannot.

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The Occupied Clinic
Militarism and Care in Kashmir
Saiba Varma
Duke University Press, 2020
In The Occupied Clinic, Saiba Varma explores the psychological, ontological, and political entanglements between medicine and violence in Indian-controlled Kashmir—the world's most densely militarized place. Into a long history of occupations, insurgencies, suppressions, natural disasters, and a crisis of public health infrastructure come interventions in human distress, especially those of doctors and humanitarians, who struggle against an epidemic: more than sixty percent of the civilian population suffers from depression, anxiety, PTSD, or acute stress. Drawing on encounters between medical providers and patients in an array of settings, Varma reveals how colonization is embodied and how overlapping state practices of care and violence create disorienting worlds for doctors and patients alike. Varma shows how occupation creates worlds of disrupted meaning in which clinical life is connected to political disorder, subverting biomedical neutrality, ethics, and processes of care in profound ways. By highlighting the imbrications between humanitarianism and militarism and between care and violence, Varma theorizes care not as a redemptive practice, but as a fraught sphere of action that is never quite what it seems.
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Paid to Care
Domestic Workers in Contemporary Latin American Culture
Rachel Randall
University of Texas Press, 2023

An insight into the struggles of paid domestic workers in Latin America through an exploration of films, texts, and digital media produced since the 1980s in collaboration with them or inspired by their experiences.

Paid domestic work in Latin America is often undervalued, underpaid, and underregulated. Exploring a wave of Latin American cultural texts since the 1980s that draw on the personal experiences of paid domestic work or intimate ties to domestic employees, Paid to Care offers insights into the struggles domestic workers face through an analysis of literary testimonials, documentary and fiction films, and works of digital media.

From domestic workers’ experiences of unionization in the 1980s to calls for their rights to be respected today, the cultural texts analyzed in Paid to Care provide additional insight into public debates about paid domestic work. Rachel Randall examines work made in Brazil, Argentina, Chile, Mexico, Peru, and Uruguay. The most recent of these texts respond to the Covid-19 pandemic, which put many domestic workers’ health and livelihoods at risk. Engaging with the legal histories of domestic work in multiple distinct national contexts, Randall demonstrates how the legacy of colonialism and slavery shapes the profession even today. Focusing on personal or coproduced cultural representations of domestic workers, Paid to Care explores complex ethical issues relating to consent, mediation, and appropriation.

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Parish Nursing - 2011 Edition
Stories of Service and Care
Verna Benner Carson
Templeton Press, 2011

The engaging stories in Parish Nursing provide accessible and enjoyable accounts of real parish nurses, both paid and volunteer, who attend to the needs of their congregations in a variety of ways—from home, hospice, and hospital visits to community outreach. This revised edition gathers their stories of hearing and heeding God’s call, of their faith that they are doing the “right thing,” of their joys, sorrows, and challenges, and of their quiet dedication as they offer their time and talents to meet the needs of others.


 

By offering inspiration and encouragement, along with a healthy dose of updated practical advice, this collection will make parish nursing theory come to life. These stories will honor practicing parish nurses, will guide the way for anyone contemplating parish nursing as a career, and will challenge church members and leaders to examine the role that their congregations play in health ministry—especially in meeting the long-term care needs of an aging population.


 
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Parish Nursing
Stories Of Service & Care
Verna Carson
Templeton Press, 2002
Parish Nursing presents a vision where nurses can serve as the vital link between secular healthcare and sacred faith-based systems. Nurses are able to provide direct ministry to members of the congregation and also can be the communicators, teachers, motivators, and encouragers of others. The parish nurse could be a key person to link the two systems and provide truly wholistic care. Reading the stories of parish nurses gives us hope that this vision might be possible—indeed must be possible—if our aging society is to flourish in the years ahead.
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The Patient Self-Determination Act
Meeting the Challenges in Patient Care
Lawrence P. Ulrich
Georgetown University Press

The Patient Self-Determination Act of 1990 required medical facilities to provide patients with written notification of their right to refuse or consent to medical treatment. Using this Act as an important vehicle for improving the health care decisionmaking process, Lawrence P. Ulrich explains the social, legal, and ethical background to the Act by focusing on well-known cases such as those of Karen Quinlan and Nancy Cruzan, and he explores ways in which physicians and other caregivers can help patients face the complex issues in contemporary health care practices.

According to Ulrich, health care facilities often address the letter of the law in a merely perfunctory way, even though the Act integrates all the major ethical issues in health care today. Ulrich argues that well-designed conversations between clinicians and patients or their surrogates will not only assist in preserving patient dignity — which is at the heart of the Act—but will also help institutions to manage the liability issues that the Act may have introduced. He particularly emphasizes developing effective advance directives. Ulrich examines related issues, such as the negative effect of managed care on patient self-determination, and concludes with a seldom-discussed issue: the importance of being a responsible patient.

Showing how the Patient Self-Determination Act can be a linchpin of more meaningful and effective communication between patient and caregiver, this book provides concrete guidance to health care professionals, medical ethicists, and patient-rights advocates.

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Putting Children First
How Low-Wage Working Mothers Manage Child Care
Ajay Chaudry
Russell Sage Foundation, 2004
In the five years following the passage of federal welfare reform law, the labor force participation of low-income, single mothers with young children climbed by more than 25 percent. With significantly more hours spent outside the home, single working mothers face a serious childcare crunch—how can they provide quality care for their children? In Putting Children First, Ajay Chaudry follows 42 low-income families in New York City over three years to illuminate the plight of these mothers and the ways in which they respond to the difficult challenge of providing for their children's material and developmental needs with limited resources. Using the words of the women themselves, Chaudry tells a startling story. Scarce subsidies, complicated bureaucracies, inflexible work schedules, and limited choices force families to piece together care arrangements that are often unstable, unreliable, inconvenient, and of limited quality. Because their wages are so low, these women are forced to rely on inexpensive caregivers who are often under-qualified to serve the developmental needs of their children. Even when these mothers find good, affordable care, it rarely lasts long because their volatile employment situations throw their needs into constant flux. The average woman in Chaudry's sample had to find five different primary caregivers in her child's first four years, while over a quarter of them needed seven or more in that time. This book lets single, low-income mothers describe the childcare arrangements they desire and the ways that options available to them fail to meet even their most basic needs. As Chaudry tracks these women through erratic childcare spells, he reveals the strategies they employ, the tremendous costs they incur and the anxiety they face when trying to ensure that their children are given proper care. Honest, powerful, and alarming, Putting Children First gives a fresh perspective on work and family for the disadvantaged. It infuses a human voice into the ongoing debate about the effectiveness of welfare reform, showing the flaws of a social policy based solely on personal responsibility without concurrent societal responsibility, and suggesting a better path for the future.
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Radical Health
Unwellness, Care, and Latinx Expressive Culture
Julie Avril Minich
Duke University Press, 2023
In Radical Health Julie Avril Minich examines the potential of Latinx expressive culture to intervene in contemporary health politics, elaborating how Latinx artists have critiqued ideologies of health that frame wellbeing in terms of personal behavior. Within this framework, poor health—obesity, asthma, diabetes, STIs, addiction, and high-risk pregnancies—is attributed to irresponsible lifestyle choices among the racialized poor. Countering this, Latinx writers and visual artists envision health not as individual duty but as communal responsibility. Bringing a disability justice approach to questions of health access and equity, Minich locates a concept of radical health within the work of Latinx artists, including the poetry of Rafael Campo, the music of Hurray for the Riff Raff, the fiction of Angie Cruz, and the performance art of Virginia Grise. Radical health operates as a modality that both challenges the stigma of unhealth and protests the social conditions that give rise to racial health disparities. Elaborating on this modality, Minich claims a critical role for Latinx artists in addressing the structural racism in public health. 
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Reconsidering Intellectual Disability
L'Arche, Medical Ethics, and Christian Friendship
Jason Reimer Greig
Georgetown University Press, 2016

Drawing on the controversial case of “Ashley X,” a girl with severe developmental disabilities who received interventionist medical treatment to limit her growth and keep her body forever small—a procedure now known as the “Ashley Treatment”—Reconsidering Intellectual Disability explores important questions at the intersection of disability theory, Christian moral theology, and bioethics.

What are the biomedical boundaries of acceptable treatment for those not able to give informed consent? Who gets to decide when a patient cannot communicate their desires and needs? Should we accept the dominance of a form of medicine that identifies those with intellectual impairments as pathological objects in need of the normalizing bodily manipulations of technological medicine?

In a critical exploration of contemporary disability theory, Jason Reimer Greig contends that L'Arche, a federation of faith communities made up of people with and without intellectual disabilities, provides an alternative response to the predominant bioethical worldview that sees disability as a problem to be solved. Reconsidering Intellectual Disability shows how a focus on Christian theological tradition’s moral thinking and practice of friendship with God offers a way to free not only people with intellectual disabilities but all people from the objectifying gaze of modern medicine. L'Arche draws inspiration from Jesus's solidarity with the "least of these" and a commitment to Christian friendship that sees people with profound cognitive disabilities not as anomalous objects of pity but as fellow friends of God. This vital act of social recognition opens the way to understanding the disabled not as objects to be fixed but as teachers whose lives can transform others and open a new way of being human.

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Refiguring Race and Risk
Counternarratives of Care in the US Security State
Roberta Wolfson
The Ohio State University Press, 2024
In Refiguring Race and Risk, Roberta Wolfson turns to novels, memoirs, and other cultural works to debunk the false sense of national security rooted in positioning people of color as embodiments of risk. Considering output by Miné Okubo, Sanyika Shakur, Abraham Verghese, Khaled Hosseini, Helena María Viramontes, and others, Wolfson demonstrates how these authors disrupt racist security regimes and model alternative strategies for managing risk by crafting stories of collective care and community building. Chapters discuss, among other examples, how gang members defy the mass incarceration of Black and Latinx Americans by committing to self-education and self-advocacy; how an Asian immigrant doctor offers a corrective to the pandemic-era trend of allowing xenophobia to inform public health decisions by providing human-centered medical services to HIV-positive patients; and how Latinx migrant farmworkers battle ongoing precarity amid the increasing militarization of the US-Mexico border by bartering life-sustaining resources. In revealing how these works cultivate love as a mode of political resistance, Wolfson relabels people of color not as a source of risk but as critical actors in the push to improve national security.
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Reinventing the Good Life
An Empirical Contribution to the Philosophy of Care
Jeannette Pols
University College London, 2023
An analytical exploration of what it means to live a good life.

Ever since Adam Smith’s musings on “the invisible hand” became more famous than his work on moral sentiments, social theorists started to pay less attention to everyday ethics and aesthetics. Smith’s metaphor of the invisible hand posits that social outcomes emerge by dint of the behaviors of individuals rather than their intentions or virtues.

Modernist and scientific approaches to determining the common good or good forms of governance have increasingly relied on techniques of generalization, rationalization, and universalization. Everyday ethics and aesthetics—and recently also matters of truth—came to be regarded as individual matters of taste. This shift, however, has meant that we no longer comprehend why and how people display a deep concern with everyday life values in their social practices. People continue to enact these values and live by them while academics lack the vocabulary and methods to grasp them.

By reconstructing the history of ideas about everyday-life values, and by analyzing the role of such values in contemporary care practices for patients with chronic disease in the Netherlands, Reinventing the Good Life seeks to explore new ways to study the values of everyday life, particularly in situations where the achievement of a clear-cut or uniform good is unlikely. The book presents a practice-based epistemology and methodology for studying everyday care practices and supporting their goodness. This analytical approach ultimately aims to generate ideas that will allow us to relate in more imaginative ways to the many pressing concerns that we are forced to live with today.
 
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Saving Animals
Multispecies Ecologies of Rescue and Care
Elan Abrell
University of Minnesota Press, 2021

A fascinating and unprecedented ethnography of animal sanctuaries in the United States
 

In the past three decades, animal rights advocates have established everything from elephant sanctuaries in Africa to shelters that rehabilitate animals used in medical testing, to homes for farmed animals, abandoned pets, and entertainment animals that have outlived their “usefulness.” Saving Animals is the first major ethnography to focus on the ethical issues animating the establishment of such places, where animals who have been mistreated or destined for slaughter are allowed to live out their lives simply being animals.   

Based on fieldwork at animal rescue facilities across the United States, Elan Abrell asks what “saving,” “caring for,” and “sanctuary” actually mean. He considers sanctuaries as laboratories where caregivers conceive and implement new models of caring for and relating to animals. He explores the ethical decision making around sanctuary efforts to unmake property-based human–animal relations by creating spaces in which humans interact with animals as autonomous subjects. Saving Animals illustrates how caregivers and animals respond by cocreating new human–animal ecologies adapted to the material and social conditions of the Anthropocene.

Bridging anthropology with animal studies and political philosophy, Saving Animals asks us to imagine less harmful modes of existence in a troubled world where both animals and humans seek sanctuary.

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Shaken Brain
The Science, Care, and Treatment of Concussion
Elizabeth Sandel, MD
Harvard University Press, 2020

A physician with thirty-five years of experience treating people with brain injuries shares the latest research on concussions and best practices for care.

The explosion of attention to sports concussions has many of us thinking about the addled brains of our football and hockey heroes. But concussions happen to everyone, not just elite athletes. Children fall from high chairs, drivers and cyclists get into accidents, and workers encounter unexpected obstacles on the job. Concussions are prevalent, occurring even during everyday activities. In fact, in less time than it takes to read this sentence, three Americans will experience a concussion. The global statistics are no less staggering.

Shaken Brain offers expert advice and urgently needed answers. Elizabeth Sandel, MD, is a board-certified physician who has spent more than three decades treating patients with traumatic brain injuries, training clinicians, and conducting research. Here she explains the scientific evidence for what happens to the brain and body after a concussion. And she shares stories from a diverse group of patients, educating readers on prevention, diagnosis, and treatment. Few people understand that what they do in the aftermath of their injury will make a dramatic difference to their future well-being; patient experiences testify to the best practices for concussion sufferers and their caregivers. Dr. Sandel also shows how to evaluate risks before participating in activities and how to use proven safety strategies to mitigate these risks.

Today concussions aren’t just injuries—they’re big news. And, like anything in the news, they’re the subject of much misinformation. Shaken Brain is the resource patients and their families, friends, and caregivers need to understand how concussions occur, what to expect from healthcare providers, and what the long-term consequences may be.

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Solidarity & Care
Domestic Worker Activism in New York City
Alana Lee Glaser
Temple University Press, 2023
The members of the Domestic Workers United (DWU) organization—immigrant women of color employed as nannies, caregivers, and housekeepers in New York City—formed to fight for dignity and respect and to “bring meaningful change” to their work. Alana Lee Glaser examines the process of how these domestic workers organized against precarity, isolation, and exploitation to help pass the 2010 New York State Domestic Worker Bill of Rights, the first labor law in the United States protecting in-home workers.
 
Solidarity & Care examines the political mobilization of diverse care workers who joined together and supported one another through education, protests, lobbying, and storytelling. Domestic work activists used narrative and emotional appeals to build a coalition of religious communities, employers of domestic workers, labor union members, and politicians to first pass and then to enforce the new law.
 
Through oral history interviews, as well as ethnographic observation during DWU meetings and protest actions, Glaser chronicles how these women fought (and continue to fight) to improve working conditions. She also illustrates how they endure racism, punitive immigration laws, on-the-job indignities, and unemployment that can result in eviction and food insecurity.
 
The lessons from Solidarity & Care along with the DWU’s precedent-setting legislative success have applications to workers across industries.
 
All royalties will go directly to the Domestic Workers United
 
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Someday All This Will Be Yours
A History of Inheritance and Old Age
Hendrik Hartog
Harvard University Press, 2011

We all hope that we will be cared for as we age. But the details of that care, for caretaker and recipient alike, raise some of life’s most vexing questions. From the mid-nineteenth to the mid-twentieth century, as an explosive economy and shifting social opportunities drew the young away from home, the elderly used promises of inheritance to keep children at their side. Hendrik Hartog tells the riveting, heartbreaking stories of how families fought over the work of care and its compensation.

Someday All This Will Be Yours narrates the legal and emotional strategies mobilized by older people, and explores the ambivalences of family members as they struggled with expectations of love and duty. Court cases offer an extraordinary glimpse of the mundane, painful, and intimate predicaments of family life. They reveal what it meant to be old without the pensions, Social Security, and nursing homes that now do much of the work of serving the elderly. From demented grandparents to fickle fathers, from litigious sons to grateful daughters, Hartog guides us into a world of disputed promises and broken hearts, and helps us feel the terrible tangle of love and commitments and money.

From one of the bedrocks of the human condition—the tension between the infirmities of the elderly and the longings of the young—emerges a pioneering work of exploration into the darker recesses of family life. Ultimately, Hartog forces us to reflect on what we owe and are owed as members of a family.

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Teaching the Practitioners of Care
New Pedagogies for the Health Professions
Edited by Nancy L. Diekelmann
University of Wisconsin Press, 2003
Contributors
Nancy L. Diekelmann
Karin Dahlberg
Margaretha Ekebergh
Pamela M. Ironside
Kathryn Hopkins Kavanagh
Melinda M. Swenson
Sharon L. Sims
Rosemary A. McEldowney
Jan D. Sinnott
[more]

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Testimonios of Care
Feminist Latina/x and Chicana/x Perspectives on Caregiving Praxis
Edited by Natalia Deeb-Sossa, Yvette G. Flores, Angie Chabram
University of Arizona Press, 2024
The first English-language collection of Latina/x caregiving testimonios, this volume gives voice to diverse Chicana/x and Latina/x caregiving experiences. Bringing together thirteen first-person accounts, these testimonios speak to the tragic flaws in our health-care system and the woefully undervalued labor of providing care to family and community.

The book opens with an introductory chapter by the three co-editors, and then is divided into three sections exploring the caregiver voice, community caregiving, and reflections that outline a Caregiver Bill of Rights and present a call to action. Throughout, contributors discuss kinship care, including formal and informal adoptions, community care, caregiving in professional health contexts, and the implicit caregiving inherent in teaching BIPOC students, which largely falls upon faculty of color.

Testimonios of Care gives voice to those who often are voiceless in histories of caregiving and is guided by Chicana and Latina feminist principles, which include solidarity between women of color, empathy, willingness to challenge the patriarchal medical health-care systems, questioning traditional gender roles and idealization of familia, and caring for self while caring for loved ones and community.

Contributors
yvonne hurtado allen
Angie Chabram
Natalia Deeb-Sossa
Yvette G. Flores
Inés Hernández-Ávila
ire’ne lara silva
Josie Méndez-Negrete
Maria R. Palacios
Hector Rivera-Lopez
Maria Angelina Soldatenko
Anita Tijerina Revilla
Mónica Torreiro-Casal
Enriqueta Valdez-Curiel
[more]

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Ties That Enable
Community Solidarity for People Living with Serious Mental Health Problems
Teresa L. Scheid
Rutgers University Press, 2021
Ties that Enable is written for students, providers, and advocates seeking to understand how best to improve mental health care – be it for themselves, their loved ones, their clients, or for the wider community. The authors integrate their knowledge of mental health care as researchers, teachers, and advocates and rely on the experiences of people living with severe mental health problems to help understand the sources of community solidarity. Communities are the primary source of social solidarity, and given the diversity of communities, solutions to the problems faced by individuals living with severe mental health problems must start with community level initiatives. “Ties that Enable” examines the role of a faith-based community group in providing a sense of place and belonging as well as reinforcing a valued social identity. The authors argue that mental health reform efforts need to move beyond a focus on individual recovery to more complex understandings of the meaning of community care. In addition, mental health care needs to move from a medical model to a social model which sees the roots of mental illness and recovery as lying in society, not the individual. It is our society’s inability to provide inclusive supportive environments which restrict the ability of individuals to recover. This book provides insights into how communities and system level reforms can promote justice and the higher ideals we aspire to as a society.
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Time To Care
Redesigning Child Care To Promote Education,
Joan Lombardi
Temple University Press, 2002
In this important work, Joan Lombardi, one of Americas foremost experts on child care, shows how our current system is not meeting the needs of America's families and describes a vision for redesigning this system to promote healthy child and youth development. Both as an expert and as a parent, the author guides the reader through the problems that face the current child care system and outlines the possible solutions. Drawing on the most recent innovations from across the country, she offers fresh ideas for improving the quality and availability of child care, both for young children and those in after school programs.From renewal of welfare reform to the administration's efforts to promote literacy, debate at both the state and federal levels about child care will continue for the foreseeable future. Joan Lombardi shows how to bridge the gap between early education and child care by taking advantage of the hours that children spend in care to encourage child and youth development and by creating a system of program and community supports to improve quality.
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logo for Harvard University Press
Views of Medical Education and Medical Care
John H. Knowles
Harvard University Press

“In recent decades, the deficiencies of our system of medical education and medical care have become clearer and more comprehensible to an expanding and highly vocal segment of the public. Many educators share the uneasiness and recognize the need for change.” These words from Dr. John Knowles's Preface define the context of this collection of thought-provoking essays, originally presented in 1966 as a series of lectures sponsored jointly by the Lowell Institute of Boston and Massachusetts General Hospital.

Written by seven men distinguished in the fields of medicine, education, and government, they are addressed to everyone, expert and layman alike, concerned with the quality of medical care in the United States. The ultimate aim of medicine is to enhance the quality of life by the prevention of disease and the comprehensive care of the sick. Technological advances continually provide us with new and better tools, but medicine is plagued by rising costs, inefficient use of facilities and personnel, and critical shortages of manpower. Each author, from his particular point of view, recognizes the need to bring medicine into contact with the social sciences, and presents concrete proposals for government aid and curriculum reform.

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We Are Not Babysitters
Family Childcare Providers Redefine Work and Care
Tuominen, Mary
Rutgers University Press, 2003
Using in-depth interviews with child care providers, Mary C. Tuominen explores the social, political, and economic forces and processes that draw women into the work of family child care. In We Are Not Babysitters, the lives and work of twenty family child care providers of diverse race, ethnicity, immigrant status, and social class serve as a window into understanding the changing meanings of community, family, work, and care. Their stories require us to rethink the social and economic value of paid child care providers and their work.
[more]

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Welcome to Wherever We Are
A Memoir of Family, Caregiving, and Redemption
Deborah J. Cohan
Rutgers University Press, 2020
Winner of the 2022 Memoir Prize for Books - Caregiving category​
ESS Public Sociology Award​
Recommended Book in Domestic Violence by DomesticShelters.org

How do you go about caregiving for an ill and elderly parent with a lifelong history of abuse and control, intertwined with expressions of intense love and adoration? How do you reconcile the resulting ambivalence, fear, and anger?
 
Welcome to Wherever We Are is a meditation on what we hold onto, what we let go of, how we remember others and ultimately how we’re remembered. Deborah Cohan shares her story of caring for her father, a man who was simultaneously loud, gentle, loving and cruel and whose brilliant career as an advertising executive included creating slogans like “Hey, how ‘bout a nice Hawaiian punch?” Wrestling with emotional extremes that characterize abusive relationships, Cohan shows how she navigated life with a man who was at once generous and affectionate, creating magical coat pockets filled with chocolate kisses when she was a little girl, yet who was also prone to searing, vicious remarks like “You’d make my life easier if you’d commit suicide.”
 
In this gripping memoir, Cohan tells her unique personal story while also weaving in her expertise as a sociologist and domestic abuse counselor to address broader questions related to marriage, violence, divorce, only children, intimacy and loss. A story most of us can relate to as we reckon with past and future choices against the backdrop of complicated family dynamics, Welcome to Wherever We Are is about how we might come to live our own lives better amidst unpredictable changes through grief and healing.

Questions for Discussion (https://d3tto5i5w9ogdd.cloudfront.net/wp-content/uploads/2020/05/11140346/Cohan_Discussion.docx)
 
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The Well-Being of the Elderly in Asia
A Four-Country Comparative Study
Albert I. Hermalin, Editor
University of Michigan Press, 2010
The past two decades have witnessed rapid social, economic, and demographic change in East and South-East Asia. The older populations in these regions have been increasing faster than in the West, and the proportions of people over sixty will more than double over the next thirty years. Increased urbanization and educational levels and a strong shift to professional, technical, manufacturing, and service occupations are changing the social and economic landscape, leading to concern for the well-being of the elderly, who traditionally have relied on the family for support. Governments are attempting to preserve these traditions while taking into account widespread family change and new expectations for pension, health insurance, and other public programs.
The contributors to this volume use survey and other data collected over ten years to examine the well-being of the current older population in four Asian countries: The Philippines, Singapore, Taiwan, and Thailand. Each major analytic chapter looks at a key dimension of well-being--economic, physical and mental health, work and leisure--and how these are affected by the familial and social support arrangements, as well as age, gender, education, and urban-rural residence. Where possible, changes over time are traced.
Explicit attention is given to the policies and programs in place and under development in each country and to the cultural accommodations underway. The contributors also look ahead to the implications of the large numbers of elderly with very different characteristics who will predominate in the coming years and to the policy implications of this coming transformation. The book will be important for scholars and policymakers whose work involves population in Asia, including demographers, sociologists, and economists.
Albert I. Hermalin is Research Scientist at Population Studies Center, Institute for Social Research, and Professor Emeritus, Department of Sociology, University of Michigan.
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Who Cares? Women, Care, and Culture
Julia T. Wood
Southern Illinois University Press, 1994

At a time when studies suggest the average American woman spends seventeen years caring for children and eighteen years caring for aging parents, Julia T. Wood examines how culture creates and sustains our definitions of caring, determines who cares along gender lines, and assigns the diminished value that caring has in our society.

Wood argues that America’s expanding need for caring is currently being met at an unacceptably high cost to caregivers. It is time, she believes, to examine caregiving roles and the personal, political, and social issues that surround the question of who cares. Caring must be recognized and promoted as an activity that commands the respect and participation of all members of our society—men and women alike.

Only by implementing changes in the basic fabric of American culture, affecting both the structure and the policies of our society and government, can we, Wood concludes, carve out a system of caring that will recognize caring as everyone’s responsibility.

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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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