Results by title

137 books match the query 'Patients' and 7 start with c

cover of Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia

Children as Caregivers

The Global Fight against Tuberculosis and HIV in Zambia

Hunleth, Jean

Rutgers University Press, 2017

Winner of the 2018 Association for Africanist Anthropology Elliott P. Skinner Book Award 

In Zambia, due to the rise of tuberculosis and the closely connected HIV epidemic, a large number of children have experienced the illness or death of at least one parent. Children as Caregivers examines how well intentioned practitioners fail to realize that children take on active caregiving roles when their guardians become seriously ill and demonstrates why understanding children’s care is crucial for global health policy.
 
Using ethnographic methods, and listening to the voices of the young as well as adults, Jean Hunleth makes the caregiving work of children visible. She shows how children actively seek to “get closer” to ill guardians by providing good care. Both children and ill adults define good care as attentiveness of the young to adults’ physical needs, the ability to carry out treatment and medication programs in the home, and above all, the need to maintain physical closeness and proximity. Children understand that losing their guardians will not only be emotionally devastating, but that such loss is likely to set them adrift in Zambian society, where education and advancement depend on maintaining familial, reciprocal relationships.  

View a gallery of images from the book (https://www.flickr.com/photos/childrenascaregivers)

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cover of Chronicling Idiopathic Pulmonary Fibrosis: A Collection of Personal Stories

Chronicling Idiopathic Pulmonary Fibrosis

A Collection of Personal Stories

Sara Whisenant

Michigan Publishing Services, 2016

Receiving a diagnosis of Idiopathic Pulmonary (IPF) can be an intimidating experience.  And it can be difficult for new patients to ask hard, personal questions in clinic.  But these powerful stories, written byIPF patients and fornewly-diagnosed IPF patients, are where those hard questions are answered.  That makes this book a must-read for newly diagnosed patients, their families and loved ones.  
 
In “Chronicling Idiopathic Pulmonary Fibrosis:  A Collection of Personal Stories,” you’ll hear the voices of real patients and family members as they talk about what worries them, the coping techniques they have tried and the bright spots of beauty they have found in the course of their journey with this disease.  Readers will learn what IPF is and what it is not.  They will find new resources and even some questions to help guide their own thoughts when reflecting on what an IPF diagnosis means to them.

The author is grateful to the FRIENDS of the University of Michigan Hospitals Patient Education Library for their generous support of this book.  Proceeds from this book will be used to improve the patient experience at the University of Michigan Health System.

 
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cover of Close to Me, but Far Away: Living with Alzheimer's

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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cover of Coming to My Senses: One Woman's Cochlear Implant Journey

Coming to My Senses

One Woman's Cochlear Implant Journey

Claire H. Blatchford

Gallaudet University Press, 2014

Deafened at the age of six, Claire Blatchford was educated orally with speech lessons, speechreading, and hearing aids. Though successful both professionally and domestically, at the age of 67 Blatchford decided to undergo a cochlear implantation. In this memoir, she describes in prose and verse living with a cochlear implant for the past three years.
 
     At first, Blatchford feared losing the last of her hearing through the surgical process. Her audiologist explained that her hearing was worsening and that soon she would move from profound deafness into a state called “cosmic deafness.” Blatchford decided upon the surgery in hope of meeting her hearing family on their turf, and of again hearing the wind, rain, rivers, and crickets. After being implanted, however, she realized that amplification and comprehension were two different things: at first, all she heard was a soup of sound, a condition known as being brain deaf.

     Blatchford soon learned, however, that regaining her hearing was a journey of discovery. Gradually, the sound soup gave way to the ability to hear some sentences without speechreading. The sound of her own voice surprised her, and she could hear her grandchildren speak. The thrill of new things heard on one car trip to a friend’s house moved her to “try my first yodel as I pass by your house.” When asked by others if they should receive an implant, she cautions that it is an individual decision that each deaf person must make. For her, it was the right decision.

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cover of Complex Sorrow: Reflections on Cancer and an Abbreviated Life

Complex Sorrow

Reflections on Cancer and an Abbreviated Life

Marianne Paget

Temple University Press, 1993

"The author's multiple voices--scholar, sociologist, victim--provide an academic, yet personal, professional, yet poignant, story....Readers face...the 'contradictory meanings' that an especially articulate woman brings to the final chapter of her life." --Women and Health In 1988, Marianne Paget published the Unity of Mistakes: A Phenomenological Interpretation of Medical Work (Temple) in which she argued that error is an intrinsic feature in medicine--an experimental and uncertain activity. Her subsequent research focused on medical negligence and on miscommunication and silence a as cause and product of error in medicine. While pursuing her research on negligence, she found out that she was an example of it. Chronic back pain that had been misdiagnosed as muscle spasms turned out to be a symptom of a rare and fatal cancer that claimed Paget's life in December 1989. This collection of her personal and professional writings on the phenomenon of error in medicine chronicles a young scholar's courageous struggle to make sense of a tragic coincidence. Discovering that she was living the charges and painful topic that she had studied so deeply, Paget write poignantly and analytically until the last week of her life about this uncanny parallel. "It is very tricky to come to terms with the reality of death without becoming trapped in that reality," wrote "Tracy" Paget to her friends. In this book, she describes "the odd way my life began to mirror my work"; her search for "life rites" when face with tasks involving wills, last rites, and farewells; and her indomitable and forthright attempt to remain intensely alive in the face of death. A Complex Sorrow, her final project, comprises essays, letters, and a journal recording her last year. Ever critical of the distanced and dispassionate stance taken in much social analysis, Paget had experimented with performance as a form for enlivening social science research. The script for her play, "The Work of Talk," about communication problems between a physician and his cancer patient, is also included. Her compelling life-text speaks to those living with illness and those who care for and about them, as the investigation and representation of lived experience. Excerpt Excerpt available at www.temple.edu/tempress "Strangely, my knowledge of error has helped me deal with the errors in my care. Had I not known about the prevalence of error in medicine I would not have been able to process what has happened to me without bitterness. But I had thought these matters through already, and more than once. I now live out the complex sorrow I have before described." --Marianne A. Paget Reviews "Paget's book is stunning. It's a tribute to the invulnerable human spirit. The woman burned like a flame; obviously she died well, because she lived well; she was loved because she was loving. The book is tremendously sad, but it isn't depressing; somehow, one is left with a sense of human possibility." --Joan Cassell, author of Expected Miracles: Surgeons at Work
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cover of Confronting AIDS through Literature: The Responsibilities of Representation

Confronting AIDS through Literature

The Responsibilities of Representation

Edited by Judith Laurence Pastore

University of Illinois Press, 1993

This anthology offers readers an array of viewpoints on the use of literature to confront AIDS as a social, literary, and medical phenomenon. A substantial annotated bibliography allows readers to pursue other fictional, biographical, poetic, and dramatic works on AIDS, ss well as criticism and analysis of AIDS writing.
 
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cover of Connective Tissue: Factory Accidents and Reconstructive Plastic Surgery in South India

Connective Tissue

Factory Accidents and Reconstructive Plastic Surgery in South India

Lily N. Shapiro

Rutgers University Press, 2025

An ethnography of factory accidents and their attendant reconstructive plastic surgeries in Coimbatore, Tamil Nadu, Connective Tissue explores notions of risk, work and labor practices, and the way meaning is made from experiences of trauma, care, and recovery. The book charts a rough chronology of the accident—from the workspace that preceded it, the transformation of the workspace by the accident, through journeys to and treatment in the hospital, and then the various and complex ways in which the accident reverberates into the future during recovery.
 
Connective Tissue revisits scholarship on factory labor by analyzing the accident as constitutive of the experience of work itself, and it refines existing conversations about the body, trauma, and care by introducing an analysis informed by theories of labor and production. Author Lily N. Shapiro argues that care does not happen in spite of or on the margins of capitalism, but rather that capitalism happens in and through care and caring relations. These experiences are intersected by identities of caste, class, and gender, and entangled in state discourse about labor rights, welfare, and industrial law.
 
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