February 2023 List
Title
February 2023 List
Collection Items
Lessons in Stories: Why Narrative Medicine Has a Role in Pediatric Palliative Care Training
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication…
Understanding Parent Experiences of End-Of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support.…
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one.…
An Unsuspected Case of Child Physical Abuse in a Pediatric Patient Enrolled in Hospice
Case Report
A 4-month-old infant with a past medical history of complex congenital heart disease and other life-limiting anomalies had been enrolled in hospice at the time of discharge from the neonatal intensive care unit at 5 weeks of age. Past…
A 4-month-old infant with a past medical history of complex congenital heart disease and other life-limiting anomalies had been enrolled in hospice at the time of discharge from the neonatal intensive care unit at 5 weeks of age. Past…
Vicarious learning and communication self-efficacy: A pediatric end-of-life simulation for pre-licensure nursing students
BACKGROUND: End-of-life clinical experiences, particularly in pediatrics, are quite limited for pre-licensure nursing students. Though effective, end-of-life simulations can be costly, require facilitators trained in palliative and end-of-life care,…
Training in Expression of Authentic Condolences in Healthcare: A Pilot Study
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
The Fraught Notion of a "Good Death" in Pediatrics
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and,…
Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones,…
Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from…
Bereaved parents involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’
Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan…
Ethics Roundtable: How Much is Too Much?
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation…
Should the Dutch Law on Euthanasia Be Expanded to Include Children?
The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under…
The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey
INTRODUCTION: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a…
Resolving Scottish paediatric end-of-life conflicts
This article considers mediation as a means of resolving decision-making disputes between clinicians and parents in paediatric end-of-life cases. It examines the legal tests applied in England and Wales and notes the lack of precedent in Scotland.…
Patient and Family Participation in Medication Decisions on Discharge to Hospice Care
Background: High-quality hospice care is characterized by patient-centered care and shared decision making between patients, families, and health care workers. However, little is known regarding the frequency and characteristics of patient and family…
What is the impact of high-profile end-of-life disputes on Paediatric Intensive Care (PIC) trainees? Original research
Introduction This study explores UK Paediatric Intensive Care (PIC) trainees’ thoughts and feelings about high-profile end-of-life cases recently featured in the press and social media and the impact on their career intentions.Methods Semi-structured…
End-of-life care over four decades in a quaternary neonatal intensive care unit
Aim Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for…
Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults
Online health communities (OHCs) have been identified as important outlets for social support and community connection for adolescents and young adults (AYAs) living with chronic illnesses. Despite evident benefits, there remains a gap in research on…
Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis
Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2)…
Surgical Intervention in Patients Receiving Pediatric Palliative Care Services
10.1542/6315738932112Video AbstractPEDS-VA_2022-0589056315738932112Many patients receiving pediatric palliative care (PPC) present with surgically treatable problems. The role of surgery in the care of these patients, however, has not yet been…
Understanding the Bereavement Process: Voices of Bereaved Parents
Analysis of in-depth qualitative interviews with 20 bereaved parents and 11 service providers revealed a more holistic conceptualization of the bereavement process for parents who have lost a child. Holistic ?states? included: ?helplessness prior to…