Full Description
[This] is a story of love, hope, and healing. There are 18 chaptersÖcovering intimate aspects of a young life ending and how those who remain behind can grieve in such a way that they can go on living. ÖThis book is a collection of clinical wisdom, theoretical knowledge, and models of care that can continue to tell the story and change cultures of care. As a palliative care nurse I am honored to write this Foreword and to be included in these pages with the authors who are truly pioneers in perinatal and pediatric bereavement."
óBetty Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN
From the Foreword
This is a definitive, state-of-the-art resource on the vital pieces of perinatal and pediatric palliative care. Culling the most important new evidence-based research and findings from scholars and practitioners worldwide, it links theoretical knowledge and clinical practice to fill a gap in current information. The text is distinguished by its provision of different and even competing perspectives that address the complexities of the tragic human experience of perinatal, neonatal, and pediatric death and its focus on the nurses and other health care providers who provide care to those involved.
Contributors disseminate new theoretical approaches and reexamine current concepts in light of new research. They discuss the theoretical underpinnings of perinatal and pediatric bereavement, examine current thought on the dimensions of loss, deliver evidence-based clinical interventions, and offer the perspective of grieving families regarding their experiences and needs. The book provides both novice and experienced scholars of perinatal and pediatric bereavement with a strong foundation of current knowledge. With clinical interventions derived from research, the book enhances the expertise of clinicians caring for bereaved women and their families. It includes case studies, interview excerpts, graphics, and review questions to illustrate key points, and summaries demonstrating how theory is translated to clinical practice and informs research. Chapters provide objectives, references, and suggestions for additional study. The book is also a valuable study aid for students
preparing for the Pediatric Loss Certification (NBCHPN) exam.
KEY FEATURES:
Provides high-level but accessible information from renowned scholars in perinatal and pediatric loss
Disseminates the newest theoretical frameworks that can be used to create interventions and develop research.
Includes case studies demonstrating how theory is applicable to research and practice
Facilitates critical thinking with different and sometimes competing perspectives
Serves as a valuable resource for Pediatric Loss Certification (NBCHPN) preparation
Contents
Foreword Betty R. Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN
Preface
SECTION I: PERINATAL BEREAVEMENT
Kristen M. Swanson
1: My Absent Child: Cultural and Theoretical Considerations of Bereavement When a Child Dies
Patricia Moyle Wright, Rana Limbo, and Beth Perry Black
Addressing Culture: A First Step in Bereavement Care
Continuing Bonds: Re-Examining How Attachments Are Maintained After Death
Posttraumatic Growth in Response to Loss
Concepts Related to Bereavement Theories
Conclusion
2: Applying Theoretical Frameworks to Research in Perinatal Bereavement
Sarah Kye Price and Dalia El-Khoury
Attachment Theory
Psychodynamic Theory
Interpersonal Theory
Cognitive Stress Theory
Feminist Theory
Emerging Perspectives: Trauma-Informed and Strengths-Based Approaches to Research
Conclusion
Case Study
Focus Questions
3: Caregiving as a Theoretical Framework in Perinatal Palliative Care
Rana Limbo, Anthony Lathrop, and Jane Heustis
Brief Historical Overview
Identifying Families in Need of Services
Layered, Progressive News Versus Sudden, Unexpected Realization
PPC Research
The Importance of Caregiving
The Internal Working Model of Caregiving
Caregiving in Bereaved Parents
Clinical Guidelines: Caregiving in Perinatal Palliative Care
Birth and Advance Care Planning
Beginning the Journey With the Family
The Role of the PPC Team
Support During the Pregnancy
Documentation
Conclusion
Case Study
Focus Questions
Resources
4: When an Expected Baby Dies: Maternal-Fetal Attachment in Context of Loss
Beth Perry Black
Theoretical Roots of Attachment and Bonding
Describing and Defining Women's Relationship to the Developing Fetus
Narratives From Three Expectant Families With a Severe Fetal Diagnosis
Conclusion
Case Study
Focus Questions
5: The Pushing On Theory of Maternal Perinatal Bereavement
Patricia Moyle Wright
Pushing On
The Process of Maternal Perinatal Bereavement
Comparison With Other Models
Clinical Implications of the POT
Discussion
Conclusion
Case Study
Focus Questions
6: When the Unthinkable Happens: A Mindfulness Approach to Perinatal and Pediatric Death
Joanne Cacciatore
Mindfulness Approaches
Meditation
Concerns About the Mindfulness Approach to Traumatic Grief
Conclusion
Case Study
Focus Questions
7: Complicated Grief and Perinatal Loss
Patricia Moyle Wright
Defining CG
Grief and the DSM-5
CG and Perinatal Loss
Treating CG
Conclusion
Case Study
Focus Questions
8: Lesbians, Parenthood, and Reproductive Loss
Danuta M. Wojnar
LGBTQ Families in the United States
Human Desire to Become a Parent
Pregnancy Launching by Lesbian Couples
Miscarriage Experiences of Lesbian Couples
Conclusion
Case Study
Focus Questions
9: Early Pregnancy Loss During Adolescence
Sara Rich Wheeler and Marlene G. S. Sefton
Adolescent Growth and Development
Integrated Theory of Bereavement
Conclusion
Case Study
Focus Questions
Appendix 9.1: Bereavement Resources
Appendix 9.2: Tips for Talking With Adolescents Who Experienced a Pregnancy Loss
10: Understanding the Experience of Pregnancy Subsequent to a Perinatal Loss
Denise Côté-Arsenault and Joann O'Leary
Theoretical Perspectives of Pregnancy
Characteristics of Pregnancy After Loss
Interventions for Supporting Parents
Conclusion
Case Study
Focus Questions
SECTION II: PEDIATRIC BEREAVEMENT
Mary Muscari
11: Conceptual Approaches to Understanding Parental Grief After the Death of a Child
Margaret Shandor Miles
Definitions of Grief
Historical Literature About Parental Grief
Conceptualization Models of Grief
Parental Grief Models
Discussion
Toward Conceptualizing the Grief of Parents
Conclusion
Case Study
Focus Questions
12: Theoretical Perspectives on Pediatric Palliative Care
Rose Steele and Kimberley Widger
Evolution of Pediatric Palliative Care
Standards and Principles of Practice
Models of Pediatric Palliative Care
Pediatric Palliative Care Specialization
Conclusion
Case Study
Focus Questions
13: Hope, Hopefulness, and Pediatric Palliative Care
Douglas L. Hill and Chris Feudtner
Theories of Hope and Hopeful Patterns of Thinking
Hope in Health and Health Care
Pediatric Palliative Care
Future Directions
Conclusion
Case Study
Focus Questions
14: Grieving the Traumatic Death of a Child
Wendy G. Lichtenthal, Geoffrey W. Corner, Corinne Sweeney, and Kailey E. Roberts
Psychological Responses to the Traumatic Loss of a Child
Theoretical Models of Adjustment
Cause of Death: Does It Matter?
Physical Health and Mortality
Risk Factors
Supporting Traumatically Bereaved Parents
Conclusion
Case Study
Focus Questions
15: Remembering the "Forgotten Bereaved": Understanding and Caring for Siblings of Completed Suicide Victims
Rebecca Kabatchnick and Beth Perry Black
Completed Suicide and Its Aftermath: Background
Reviewing the Literature on Siblings of Completed Suicide Victims
Interventions
Toward No Longer Shedding Tears Alone
Conclusion
Acknowledgment
Case Study
Focus Questions
16: Bereavement in Young Children With Siblings in Pediatric Palliative Care
Betty Davies, Camara van Breemen, Susan Poitras, and Eric Stephanson
The Long-Term Nature of PPC
Anticipatory Grief
The Model: Shadows in the Sun
Community Bereavement Resources
Conclusion
Case Study
Focus Questions
17: Supporting Grieving Children
Andy McNiel and Donna L. Schuurman
Definition of Terms
How Children Understand and Process Death
Understanding How Death Impacts Children's Lives
What Grieving Children Need
Talking to Children About Death
Talking to Children About the Impending Death of Someone Close to Them
Sharing the News of Death With Children
Children's Involvement in Funerals and Rituals
Cultural Issues Impacting Grieving Children, Teens, and Families
Conclusion
Case Study
Focus Questions
18: Moments Matter: Exploring the Evidence of Caring for Grieving Families and Self
Rana Limbo and Kathie Kobler
Background
Relationship-Based Care
Professionals Caring for Bereaved Parents
Caregiver Suffering
Conclusion
Case Study
Focus Questions
Resources
Index
