Patients’ Lived Experiences During the Transplant and Cellular Therapy Journey: Harvest and Hope

ISBN-13: 9783031256011 / Angielski

Jean Coffey; John M. Hill; Thomas Long

Opis

The book was envisioned by bedside nurses caring for transplant and cellular therapy patients as a way to teach novice nurses and health care colleagues about the care required for this complex patient population. The nurse authors recruited an oncology nurse practitioner, transplant physician, nurse scientist and expert in medical humanities and health studies to join the project team. The dedication of the team and the willingness of the patients to contribute to the project, has led to a unique case study approach focused on the lived experience of patients and care partner(s) during the transplant/cellular therapy journey. The case studies are unique in that they encompass a qualitative narrative developed using Interpretive Phenomenological Analysis (IPA) and the inclusion of the individual's actual medical and nursing care from their health record. At every step along the trajectory of the illness, the medications and care received are described, interspersed with the voice of the patient and care partner(s) sharing their experiences.

 

The chapters follow the individual patients and their care partner(s) through all phases of their illness. The interviews were conducted, and case studies written by the bedside clinical nurses. Visual art and prose created by patients and care partner(s)s are included in the chapters. The book also includes an introduction written by the nurse authors, a methods chapter on the inclusion of IPA in a case study, and poignant epilogue. The premise of nursing support for survivorship is woven throughout the book, highlighting how giving back aids in recovery identity.

This book, full of beautiful artworks and poems, is the work of clinical nurses devoted to improving care for their patients by sharing the patient stories with others. It introduces a unique approach to the case study which could be replicated and applied to any diagnosis.

Spis treści

Foreword by Susan K. Stewart, Executive Director of Blood and Marrow Transplant Information Network

Introduction Lisa Wesinger, RN, BSN,  OCN, Judi Gentes, RN, ADN, Carissa Morton, RN, BSN,(5 pages)

Creating a Patient-Centered Case Study, Jennifer Holl, DNP,RN,  Jean Coffey PhD, APRN, FAAN (15 pages)

Part A. The Autologous Stem Cell Transplant Journey

Chapter 1. Hope and Determination by Lisa Wesinger, Judi Gentes, Carissa Morton and Jennifer Holl (18 pages)

Chapter 2. The Hugger by Lisa Wesinger (13 pages)

Chapter 3. Spaces in Between by Judi Gentes (8 pages)

 

Part B. The Allogeneic Stem Cell Transplant Journey

Chapter 4. Saving Superman by Sara Cooke (9 pages)

Chapter 5. Brothers in Arms by Lisa Wesinger (10 pages)

Chapter 6. Letting Go by Carissa Morton (7 pages)

Chapter 7. Another Ode to August by Lisa Wesinger (10 pages)

Chapter 8. Dr’s Orders by Ashley Prokopik (TBD)

Chapter 9. Am I Dreaming by Judi Gentes (9 pages)

Chapter 10. With Every Sunrise I’ll Do Better by Sara Cooke (7 pages)

 

Part C. The CAR T-Cell Journey

Chapter 11. Second Chances by Kate Caldon (TBD)

 

Epilogue: Saying Goodbye, Lasting Reflections and New Horizons by John Hill (TBD)

O autorze

Jean Coffey PhD, APRN, CPNP, FAAN  is entering her 46th year of nursing practice. Over the span of her career, she has provided care at the bedside, in homes and school settings. She has been the nursing director of two children’s hospitals, director of maternal child health in a large home care agency and director of nursing research and education in an academic medical center. More recently she has practiced as a pediatric nurse practitioner in primary care. As a full clinical professor, she teaches pre-licensure and graduate nursing students. Her publications include a recent book chapter in a primary care text and a meta synthesis on caring for children with chronic illness that has been cited across the globe.

John M. Hill, Jr., MD is an Associate Professor of Medicine in the Geisel School of Medicine at Dartmouth and Director of the Allogeneic Transplant and Cellular Therapy Program in the Dartmouth Cancer Center at Dartmouth Health. Dr. Hill received his undergraduate degree from Princeton University and his MD from the University of Connecticut School of Medicine. He completed his Internal Medicine Residency at the National Naval Medical Center, Bethesda, Maryland and Hematology/Oncology Fellowship training in the National Cancer Institute (NCI)/Navy combined program, with clinical training in Bone Marrow Transplantation at the Fred Hutchinson Cancer Research Center in Seattle, Washington. His primary area of interest is the use of cellular immunotherapy for the treatment of patients with hematologic malignancies and in novel approaches toward minimizing morbidity and mortality and optimizing functional status following this therapy.

Thomas Lawrence Long, PhD, a medical humanities and health studies scholar, is curator of the Josephine A. Dolan Nursing History Collection at the University of Connecticut’s School of Nursing. He is the author of AIDS and American Apocalypticism: The Cultural Semiotics of an Epidemic (SUNY Press), co-author of Writing in Nursing: A Brief Guide (Oxford University Press), and co-editor of The Meaning Management Challenge: Making Sense of Health, Illness, and Disease (Brill). 

 

Elizabeth B. McGrath DNP, AGACNP-BC, AOCNP, ACHPN is an advanced practice nurse currently employed at Dartmouth-Hitchcock Medical Center as a nurse practitioner in the Gastrointestinal Program in the Dartmouth Cancer Center. She is the Director of the Dartmouth Cancer Center Survivorship Program and chair of the Psycho-oncology subcommittee. She has over forty year’s oncology experience and has worked in a variety of practice settings including radiation oncology and medical oncology. Elizabeth has extensive clinical and teaching expertise and holds certification as an Adult Geriatric Acute Care Nurse Practitioner, as well as an Advanced Oncology Nurse Practitioner and an Advanced Certified Hospice and Palliative Care Nurse. She received her Doctorate in Nursing Practice in 2015 from Northeastern University.

Elizabeth is an Assistant Professor of Medicine at the Geisel School of Medicine at Dartmouth, an Associate Professor of Nursing in the DNP program at Northeastern University and Adjunct Faculty for graduate nursing at Colby-Sawyer College. Elizabeth is on the Board of Directors for the Northern New England Clinical Oncology Society and a member of the Executive Committee. Elizabeth co- chairs the Allied Health Education Subcommittee for NNECOS and coordinates the annual Spring Meeting & OCN review course and Palliative Care Symposium.

Blurb

The book was envisioned by bedside nurses caring for transplant and cellular therapy patients as a way to teach novice nurses and health care colleagues about the care required for this complex patient population. The nurse authors recruited an oncology nurse practitioner, transplant physician, nurse scientist and expert in medical humanities and health studies to join the project team. The dedication of the team and the willingness of the patients to contribute to the project, has led to a unique case study approach focused on the lived experience of patients and care partner(s) during the transplant/cellular therapy journey. The case studies are unique in that they encompass a qualitative narrative developed using Interpretive Phenomenological Analysis (IPA) and the inclusion of the individual's actual medical and nursing care from their health record. At every step along the trajectory of the illness, the medications and care received are described, interspersed with the voice of the patient and care partner(s) sharing their experiences.

 

The chapters follow the individual patients and their care partner(s) through all phases of their illness. The interviews were conducted, and case studies written by the bedside clinical nurses. Visual art and prose created by patients and care partner(s)s are included in the chapters. The book also includes an introduction written by the nurse authors, a methods chapter on the inclusion of IPA in a case study, and poignant epilogue. The premise of nursing support for survivorship is woven throughout the book, highlighting how giving back aids in recovery identity.

This book is the work of clinical nurses devoted to improving care for their patients by sharing the patient stories with others. It introduces a unique approach to the case study which could be replicated and applied to any diagnosis.