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

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. Foreword Ode to a Nurse Acknowledgments Contents Editors and Contributors About the Editors About the Contributors 1: Introduction Reference 2: Creating a Patient-Centered Case Study 2.1 Purpose and Rationale 2.2 Research Design 2.3 Human Subjects Approval 2.4 Methodology 2.4.1 Case Selection 2.4.2 Unit of Analysis 2.4.3 Data Collection Procedures 2.4.4 Data Analysis 2.4.5 Validity and Reliability 2.5 Theoretical Underpinnings 2.6 Limitations 2.7 Conclusion References Part I: The Autologous Stem Cell Transplant Journey 3: Hope and Determination: A Family’s Strength 3.1 Day −6: Admission/Carmustine (BCNU) 3.2 Day −4: Etoposide 3.3 Day −2: Cyclophosphamide 3.4 Day 0: Stem Cell Infusion 3.5 A Quick Review of Some Potential Complications 3.5.1 Fluid Overload 3.5.2 Electrolyte Abnormalities 3.5.3 Mucositis 3.5.4 Anemia and Thrombocytopenia 3.5.5 Infertility 3.5.6 Day +2: Start of Discharge Teaching 3.5.7 Day +5: Initiation of Granulocyte Colony Stimulating Factor (Neupogen) 3.5.8 Day +11: Discharge Home 3.5.9 Post-Transplant Care References Suggested Readings 4: The Hugger Reference 5: Spaces In-Between Sources Consulted Part II: The Allogeneic Stem Cell Transplant Journey 6: Saving Superman 7: Brothers in Arms 7.1 Nurse Vivian Comments on This Friendship Sources Consulted 8: Letting Go 8.1 Post-Stem Cell Transplant References 9: Another Ode to August Reference 10: Doctor’s Orders References 11: Am I Dreaming? Sources Consulted and Adapted for Treatment Regimen 12: With Every Sunrise I’ll Do Better Sources Consulted Part III: The CAR T-Cell Journey 13: Second Chances References Part IV: Afterword 14: Saying Goodbye, Lasting Reflections, and New Horizons 14.1 Essence of the Provider–Patient Relationship 14.2 Saying Goodbye 14.3 When the Patient Is a Colleague/Friend 14.4 Continuity with Caregivers 14.5 Lasting Reflections (Remembering and Honoring) 14.6 New Horizons 14.6.1 CAR T-Cell Therapy 14.7 Patient-Reported Outcomes (PROs) 14.8 Enhanced Focus on Survivorship References My Wish: Liane Lambert Wind