The Realization of Parental Knowing: End-of-Life Decision Making in Pediatric Blood and Marrow Transplantation
The Realization of Parental Knowing: End-of-Life Decision Making in Pediatric Blood and Marrow Transplantation

Author: Cindy Jo Rishel

Publisher:

Published: 2010

Total Pages: 336

ISBN-13:

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Blood and marrow transplantation (BMT) has become an increasingly acceptable treatment for children with life threatening malignant diseases. Survival rates for transplant recipients vary from 23% to 63%. Children with complications from BMT, typically die in the hospital after a prolonged stay. The parental decision to allow a child to die a natural death is typically made in an aura of emotional duress and bewilderment at the complexity and volume of new information that must be assimilated. The purpose of this study was to describe the process of parental decision making for Do Not Resuscitate (DNR) or to withdraw life support in pediatric BMT. The framework for this study was developed from the author's epistemology that blends neo-modernism (recognition of individual uniqueness yet acknowledgment that certain underlying universal principals exist) with the idea that the nature of all things may be viewed as an ongoing, self-constructing process. Grounded theory methodology was used. The sample (determined through theoretical sampling) consisted of seven parents of children who died following BMT and for whom the parent made an end-of-life decision. Data was analyzed using constant comparative analysis, a method that combines both substantive and theoretical coding of data with a qualitative style of theory development. The realization of parental knowing was the process that parents used to navigate the human problem of having to make the end-of-life decision for their children who were dying following blood and marrow transplantation. This process consisted of four categories: Developing Trust, Committed to Seeing It Through, Facing My Worst Fear, and Acceptance of Self. The knowledge gained from this study will inform nurses who care for children who are dying following pediatric BMT. Strategies may be developed that will assist nurses to support the development of parental trust, to help sustain the commitment of parents as they move through the BMT treatment journey, and to assist parents as they face their worst fear. As a result, parents should be better able to achieve an acceptance for themselves that will facilitate a more satisfying experience of the ever changing process occurring in their own lives.

Ethical Issues in Pediatric Organ Transplantation
Ethical Issues in Pediatric Organ Transplantation

Author: Rebecca A. Greenberg

Publisher: Springer

Published: 2016-05-25

Total Pages: 354

ISBN-13: 3319291858

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This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating the media are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers.

Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery
Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery

Author: Constantine Mavroudis

Publisher: Springer Nature

Published: 2020-02-28

Total Pages: 274

ISBN-13: 3030356604

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This title reviews the bioethical issues in congenital heart disease and other difficult pediatric cardiology and cardiac surgical situations. It provides considered opinions and recommendations as to the preferred actions to take in these cases, stressing the importance of making informed decisions that are bioethically sound and doing so using considered reasoning of all the related sensitive issues. Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery provides detailed recommendations on potential solutions to make bioethical decisions in difficult clinical scenarios. There is particular emphasis on controversies involving surgery for hypoplastic left heart syndrome, futility, informed consent, autonomy, genomics, and beneficence. It is intended for use by a wide range of practitioners, including congenital heart surgeons, pediatric cardiologists, pediatric intensivists, nurse practitioners, physician’s assistants, and clinical ethicists.

Interdisciplinary Pediatric Palliative Care
Interdisciplinary Pediatric Palliative Care

Author: Joanne Wolfe

Publisher: Oxford University Press

Published: 2022-01-11

Total Pages: 625

ISBN-13: 0190090030

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Interdisciplinary Pediatric Palliative Care provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families. The field of palliative care is based on the fundamental principle that an interdisciplinary team is optimal in caring for patients and their families throughout the illness trajectory. The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more. It emphasizes the value of words and high-quality communication in palliative care. Importantly, content acknowledges challenging periods between team members, and how those can ultimately benefit team, patient, and family care outcomes. Each chapter includes the perspective of the family of a seriously ill child in the form of a vignette to promote care team understanding of this crucial perspective. This second edition is founded on a wealth of evidence that reflects the innovations in pediatric palliative care science over the past 10 years, including initiatives in clinical care, research, and education. Interdisciplinary Pediatric Palliative Care is appropriate for all pediatric palliative clinicians (PPC), including physicians, nurses, psychosocial clinicians, chaplains, and many others. All subspecialists who deliver care to seriously ill children, will find this book a must-have for their work. Advance Praise for Interdisciplinary Pediatric Palliative Care, Second Edition "This new edition is as much a testament to pediatric palliative care's remarkable evolution as a field as it is a quintessential playbook for providing the high-quality holistic and compassionate care that families with seriously ill children desperately want. Every page thoughtfully weaves together how interprofessional teams can contribute collaboratively to learning about and supporting the preferences, needs and priorities of the precious patients and families in their circle of care. It is a must read for all practitioners to enhance their palliative care understanding, appreciation and ability as a foundation for optimizing quality of life in practice." - Rebecca Kirch, JD, Executive Vice President of Policy and Programs, National Patient Advocate Foundation "This book offers a truly contemporary and comprehensive view of the entire field of pediatric palliative care. The focus on social determinants of health, cultural humility, and disparities in care could not be timelier, and the section highlighting conflict and conflict resolution should be required reading. The continued and purposeful inclusion of interdisciplinary clinicians in producing each chapter models the palliative care team itself-an approach in which all voices are necessary as we seek to provide the most compassionate care possible." - Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, Associate Professor of Anesthesia, Medical Director, StarShine Hospice and Palliative Care, Cincinnati Children's Hospital Medical Center

The Pediatric Cardiology Handbook
The Pediatric Cardiology Handbook

Author: Myung Kun Park

Publisher: Mosby

Published: 2010

Total Pages: 0

ISBN-13: 9781416064435

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The Pediatric Cardiology Handbook: Mobile Medicine Series, 4th Edition, by Myung K. Park, MD, FAAP, FACC, is a pediatrics reference that provides the practical knowledge you need to diagnose and manage children with congenital and acquired heart disease. It emphasizes new medical management and surgical techniques, as well as the results of surgery for a number of cardiac conditions. A user-friendly organization helps to facilitate the decision making process, while revised coverage and new chapters reflect the rapid changes taking place in the field. Based on Dr. Park's larger reference, Pediatric Cardiology for Practitioners, this pocket-sized book is a portable, succinct, and practical resource. Features a user-friendly organization designed to facilitate the decision making process. Offers comprehensive and reliable information in a quick-access format. Includes abundant illustrations that offer a quick and in-depth understanding of the material covered. Provides portable access to practical, clinical information that you can consult on the go. Offers new chapters covering palpitation, dyslidemia and other cardiovascular risk factors, athletes with cardiac problems, and cardiac transplantation, providing you with the most up-to-date guidance. Emphasizes new medical management and surgical techniques, as well as the results of surgery for a number of cardiac conditions, to keep you current.