Showing 311 - 320 of 912 annotations tagged with the keyword "Patient Experience"

Summary:

This outstanding anthology of poems, stories, excerpts and essays by African-American writers is prefaced by a poem ("Aunt Sue’s Stories" by Langston Hughes), a foreword, two essays and an introduction. The book is then divided into three sections: Section I, Illness and Health-Seeking Behavior; Section II, Aging; and Section III, Loss and Grief.

Each section begins with an introduction which clarifies the choice of the section’s theme and briefly describes each piece. At the conclusion of each section is a list of ten to fifteen questions which "are intended for personal reflection and group discussion." Brief autobiographical information for each of the thirty-one authors is presented in Appendix 1.

As Secundy notes in the introduction, a divide exists between the health care worker and patient, which is particularly prominent when color and economic status are different between them. Secundy, as an educator in the medical humanities, selected pieces that reveal "the significance of color and social distinctions" when African-Americans face illness or enter the health care system.

The selections chronicle struggle and survival, illness and loss, humiliation and pride, triumph and sorrow. These pieces speak to all of us, as Edmund Pellegrino states in his essay, "Ethnicity and Healing": "[p]aradoxically, as we learn more about the uniqueness of African-American culture, we are drawn closer to the common humanity we share with the subjects of these stories and poems."

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Summary:

Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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Equal Partners

Heymann, Jody

Last Updated: Nov-22-2009
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

A new graduate from medical school experiences her first seizure on the eve of beginning internship. Diagnostic workup reveals a mass in the wall of the third ventricle, which, at the time of surgery, is a vascular malformation. The narrative takes the reader through the four years of the author's struggle with her diagnosis, treatment and resultant disability, a seizure disorder.

Laced through the tale are patient vignettes, told from the vantage point of a newly sensitized doctor who is a long-term patient herself. Heymann is gently critical of many of the interactions she experienced with her physicians, attempting to chide her colleagues into being more sensitive to patient-centered concerns.

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Sanatorium

Maugham, W. (William) Somerset

Last Updated: Nov-22-2009
Annotated by:
Willms, Janice

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

This is a series of vignettes involving a small cluster of patients in an early twentieth century tuberculosis sanatorium located in Scotland. The stories are narrated by one of the patients who makes observations and predictions about his peers in the institution. The lives Maugham chooses to have narrated are those of two men, long-term residents, whose daily entertainment is to irritate one another. There is a mixture of humor and pathos in the dialogue between these two. The second story within a story is that of the developing love between a dying man and a moderately ill woman--and the decision they ultimately make about the importance of their relationship in the face of the man’s impending death.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Written by a Jungian psychoanalyst about her own experience with metastatic breast cancer, this memoir is a two year chronicle extending from the day of diagnosis through sequential remissions and relapse, to the remission following stem cell transplant. In the course of this voyage, the author deals with her own fear and anger, the range of responses elicited from family and friends, and her anxiety about the technology and impersonality of the health care system.

The book ends, but Middlebrook's story does not. She is feeling well as she recovers from her transplant. She knows she still has a lethal tumor. The only thing she doesn't know is when it will claim her life.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The story opens two years into the writer's undiagnosed hematological disorder, focusing the narrative on the two most significant issues in this young woman's life--her first experience with a love relationship that is to result in a long-term commitment, and the disease that for years is to affect the way she lives her day-to-day life. Breslin describes in considerable detail her encounters with hospitals and health care professionals, none of whom are able to diagnosis nor prognosticate but continue to treat each new symptom as it arises.

In the midst of this uncertainty which pervades the memoir, are the subtexts of the love between the author and her husband and the relationship she maintains with her father. The reader, presumably like the author herself, never learns the name of the mysterious illness that informs the tale.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Ott opens her treatment of the cultural, social and economic evolution of tuberculosis in the U.S in the mid-nineteenth century, although she refers back to antecedent historical events. The study follows how the evolving principles of bacteriology were applied to a syndrome the medical world did not recognize as having a single etiology. Tuberculosis did not fit the epidemiologic patterns of epidemic diseases as recognized by public health specialists.

Ott focuses heavily on the economics of the illness, as well as on its changing social status. Her final chapter examines the contemporary meaning of the disease as it once again is heralded as a public health problem in the U.S.

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Summary:

In this study of a small group of children followed by an HIV clinic at an unidentified institution, the author describes in detail her experience with the children, their caregivers--sometimes biological family members, sometimes foster providers--and the medical staff responsible for the management of their viral infection. The writer, a humanities professor at a medical school, acknowledges the privilege she felt at having been in a position to develop a close personal contact over several years with the people about whom she writes.

The frame of the study is case-oriented. Each child is described and the medical and social histories of a total of nine are outlined and then fleshed out with personal interviews and home visits made by the writer. In addition to the histories, Hawkins includes a glossary of contemporary medical terms and common acronyms relevant to HIV, a bibliography, and a list of resources for those interested in looking further into this infection as it presents in children.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

This is the wrenching history of the development, evolution, and eventual obsolescence of the leper colony established in 1866 on the isolated and only sometimes accessible peninsula on the Hawaiian island of Molokai--and the lives of the people who were exiled there to die over a period of more than 100 years. The tale opens with the declaration by the Board of Health that all persons proven (or strongly suggested) to be afflicted with leprosy be exiled immediately to the site on Molokai.

The author dramatically describes the selection and separation of the exiles from their families and the tortuous and sometimes deadly sea voyage to their primitive new homeland. Mixed with the public policy and the individuals who made and implemented it, are the descriptions of the hospital in Honolulu where diagnoses and dispositions were rendered, as well as the poignant personal stories of the "detainees." The reader follows the colony from the arrival of its first 13 patients in 1866, through its peak population of 1,144, to its residual 28 in 2003.

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