Showing 81 - 90 of 848 annotations tagged with the keyword "Caregivers"
Summary:Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).
This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom. Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences.
Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself. While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses. Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy.
Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time. In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance. When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected. In retrospect she is more adult, more mature than most young women might be in each of these situations. She is a remarkable young woman with a spirited edge.
Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.
As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors. While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity. “For this post-human body is one that exists mainly in abstract, immaterial form. It is a body that has become pure information.” (p. 11)
Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions. As Helman steadily notes, the physician must be an archeologist:
Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)
In general, the chapters illustrate first an initial review of medical history, and then specific patient stories. Of the two, the story is most important. “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc. That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist. Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.
In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”. Patients are more than a diagnosis dressed in clothes. Doctors must make patients “feel seen, listened to, alive”. Always patients should be regarded as people who happen to be sick. From his admired colleague Helman learned to be an attentive listener to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart. The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple.
Summary:This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than . . the delivery of medical care" (quoted on page 7).
In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.
Embedded in the successes and failures of the research applications are the details of human interactions. Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.
For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition. Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization. Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution. Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need. Each view had its own cadre of supporters and of opponents.
Funding issues also troubled those fighting the polio epidemics. The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.
Summary:In the course of sharing her own experience of breast cancer diagnosis and treatment, the writer offers personal reflections on coping with each of a number of specific challenges most American women with breast cancer face: desperation, fear, sadness, anger, guilt, overwhelming choices about treatment, side-effects of treatment, grief, adjusting to a new "normal," shifts in relationship, and rethinking spirituality. She raises hard questions in a compassionate way, encouraging readers to use the experience of illness as an occasion for examining and growing into a new phase of psycho-spiritual maturity.
Summary:This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for. The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability.
Summary:In this collection of essays on writers' end-of-life memoirs Berman combines a fine-tuned appreciation of literary strategies with reflections on how writers, who have defined themselves, their philosophies, their voices, and their values publicly, bring their life work to characteristic and fitting conclusions in writing about their own dying. The writers he considers cover a broad spectrum that ranges from Roland Barthes and Edward Said to Elisabeth Kübler-Ross and Tony Judt to Art Buchwald and Randy Pausch. Each essay offers insights into the writer's approaches to death and dying against the background of his or her earlier work.
Annie Howard is beginning high school in Tacoma, Washington in 1950, four years after her father returned from World War II, having been blinded in combat. Her mother has opened her own beauty salon as a way of coping with her husband’s disability and the loss of earning power it has meant. Annie loves her father, and maintains a close relationship with him, but is dismayed by his recurrent depressions and his steady refusal to get a guide dog, go out into the world, and respond to invitations to volunteer with an organization that helps other veterans similarly afflicted. As the school year begins she meets two new friends, a Dutch brother and sister—refugees whose parents were killed in the war and who now live with an aunt and uncle. Through them, and ultimately through her father, Annie learns some hard truths about the lasting effects of trauma, about the role of acceptance in healing, and about how a more grown-up love involves willingness to accompany others through some of the darker dimensions of suffering.
According to the editor’s introduction, this collection is based on the AMSA (American Medical Student Association) assertion that the physician must be a humanist, a communicator and an advocate as well as a scientist. To support these and related commitments, it offers essays that demonstrate how and under what circumstances the introduction of creative arts into the lives of professional care providers and their patients and families may be achieved. Included in some essays are general themes, while in others there are very detailed descriptions of methodology. Others utilize more standard research designs and outcomes.
What creative arts are included in the discussions? Visual arts, drama, music, and story-telling stand out in terms of potential and, in some cases, already demonstrated applicability to a medical practice. Some of the essays propose art forms that can be translated into a useful frame for health practitioners, artists and/or patients and their families.
Some essays include assessment of research projects or various designs of methodologies for using creative art in the medial professional education environment. Others rely on personal experiences using the arts in the learning and teaching of skills such as communication with peers, patients, family and friends.
The volume is divided into four sections. The first cluster of essays considers using the arts to illustrate empathy in encounters among providers and recipients of health care services. This is demonstrated in a variety of settings as disparate as end-of-life situations and dental training programs.
The second section includes examples of drama, music and drawing as part of caring for caregivers. Through group settings and peer support, art serves as a stress reducer for those whose work involves the highly emotional situations health professionals often encounter.
Section three explains and demonstrates the narrative reflective process, in which experiences and stories are shared among those persons involved as patients, family members and caregivers. The special situation of interviews in pediatrics is given attention in one portion of this section.
The final section addresses the question of using art to explore troublesome issues that demand change or special attention. Included are ethical dilemmas and the need for health professions to build bridges to the community at large.