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"I just wish I had armfuls of time." These are the words of a four year old facing a life-threatening illness. This text portrays the psychological experience of such children, who are irreversibly changed from the moment of diagnosis. Barbara Sourkes is a psychologist who specializes in psychotherapy with children who have cancer and other serious diseases. In the account, she describes how she works with these children, using drawings, soft toys and dolls, stories and real medical instruments to allow them to communicate their experience of the illness, the treatment they undergo, their relationship with their families, and their feelings of grief and loss in coming to terms with the prospect of death. Making use of the words of children, offering interpretations and practical advice, this is a book that should be useful reading for those concerned with the care of terminally ill children.
"I just wish I had armfuls of time." These are the words of a four year old facing a life-threatening illness. This text portrays the psychological experience of such children, who are irreversibly changed from the moment of diagnosis. Barbara Sourkes is a psychologist who specializes in psychotherapy with children who have cancer and other serious diseases. In the account, she describes how she works with these children, using drawings, soft toys and dolls, stories and real medical instruments to allow them to communicate their experience of the illness, the treatment they undergo, their relationship with their families, and their feelings of grief and loss in coming to terms with the prospect of death. Making use of the words of children, offering interpretations and practical advice, this is a book that should be useful reading for those concerned with the care of terminally ill children.
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 Deepening Shade" is an elegant synthesis of the psychology of life-threatening illness. The book's evocative power derives from the interweaving of clinical conceptualization with the words of patients and family members. Rather than focusing on death, Sourkes explores "living" with a life-threatening illness.
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