Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 126–150 of 560 publications
Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in a community setting: Does it facilitate best interests decision-making?
When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby’s death before or soon after birth, they experience a range of complex emotions. Perhaps paradoxically, one com…
Voices of experience: what Dutch parents teach us about values and intuition in periviable decisions
Objective: When extremely premature birth at the limits of viability is imminent, shared decision-making with parents regarding the infant's treatment is widely recommended. Aligning decisions with parental values can be challenging. So, this study aims to get…
When Is Intensive Care Warranted for the Most Immature Infants?
Abstract
Withholding or starting, withdrawing or continuing, high-technology interventions available to extremely premature newborns is a fundamental challenge in obstetrics and neonatology. Attempting to save an infant's life is a judgment fraught with uncert…
Who You Gonna Call? Ethical Conundrums in Pediatric End-of-Life Care
Pediatric end-of-life cases require a nuanced response to complex challenges (e.g., limits of parental authority, duty of child protection, and the inherent ambiguity–even impracticality–of the best interest standard). This is especially the case in the neonat…
A Phenomenological Study of Clinical Stillbirth Management for Grieving Mothers
For any expectant mother, the worst possible outcome of pregnancy is for the baby to die. The experience can lead to various forms of physical and psychosocial morbidity. The purpose of this study was to gain in-depth understanding of the experiences of mother…
Application of the Adverse Childhood Experiences Framework to the NICU
Background:
Infants and families requiring neonatal intensive care unit (NICU) care often experience significant stress and trauma during the earliest period of the infant's life, leading to increased risks for poorer infant and family outcomes. There is a n…
Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review
OBJECTIVE: The objective of the scoping review was to explore the evidence and describe what is known about perinatal bereavement care guidelines provided within health care facilities prior to discharge. Additionally, the review sought to identify what is kno…
Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions
Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social context o…
Compassion fatigue and palliative care in neonatal nurses
Introduction: Neonatal intensive care units (NICUs) emerge as one of the areas where palliative care is most needed. This study was conducted to examine the attitudes and compassion fatigue levels of NICUs nurses working in Şanlıurfa, where the fertility rate …
Complex end-of-life decision-making during neonatal retrieval: A retrospective cohort study
Aim: The aim of this study was to compare patients referred to our retrieval service who were palliated before transfer, versus those transferred who were palliated within 7 days of birth.
Methods: We conducted a retrospective chart review of infants referred…
Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review
Background: Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short- and long-te…
Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care
Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the…
Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' re…
Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequency an…
Doctor-Parent Disagreement for Preterm Infants Born in the Grey Zone: Do Ethical Frameworks Help?
Objective: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in us…
Effectiveness of an Interdisciplinary Pediatric and Neonatal Palliative Care Simulation Program in India
Background
Palliative care is a human right to which all people should have access, however pediatric and neonatal palliative care resources are limited in India.
Design and Methods
A quantitative one-arm pre-test / post-test and descriptive correlational desi…
Empathic Care of Neonates: A Critical Literature Review
Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others. The authors …
End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study
Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this de…
End of life care in a level IV outborn neonatal intensive care unit
OBJECTIVE: Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU). STUDY DESIGN: Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years. RESULTS: A goals of care (GOC) conversation w…
Evaluation of a perinatal palliative care program by SWOT analysis
Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience gained over te…
Experiences of Nurses and Midwives Who Support Bereaved Parents During Perinatal Deaths in Ghana: A Descriptive Phenomenological Study
IntroductionGlobally, perinatal death presents a profound challenge for healthcare and healthcare professionals, requiring enormous clinical expertise and mental fortitude. The complexity involved in balancing professionalism, empathy, and the human face pose …
Exploring Parent Experiences With Early Palliative Care Practices in the NICU
BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliat…
Exploring the Learning Process for Neonatology Fellows of Giving Serious News on a Virtual Platform
Background Since 1998, the Accreditation Council for Graduate Medical Education has highlighted the importance of teaching palliative care skills, yet neonatology fellows sometimes receive varied and inadequate training on these topics. As this study was condu…
Exploring the Role of Genetic Testing in Decisions to Redirect Care in Critically Ill Infants
OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end of life ca…
Facilitating home birth in perinatal palliative care: A case report
Abstract
Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is …