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 426–450 of 560 publications
Fragile lives with fragile rights: Justice for babies born at the limit of viability
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many d…
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of supp…
Increasing accurate palliative care consultation in the NICU
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population…
In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making
OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we r…
Introduction of triggers for palliative care consultation improves utilization and satisfaction within a level four NICU
OBJECTIVE: We sought to explore the beliefs regarding palliative care team utilization, as well as increase consultation and awareness of the palliative care team's role in the NICU. STUDY DESIGN: The study design in this Level 4 NICU included observational ti…
Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medica…
Introduction of triggers for palliative care consultation improve utilization and satisfaction within a level IV NICU
Objectives * Identify three key elements that influence successful implementation of triggers for palliative care consultation within a NICU setting. * Recall the four major trigger domains that qualify for pediatric palliative care consultation within a NICU …
Memory making in neonatal end-of-life care
Background: Providing appropriate psychosocial care for parents experiencing the loss of a newborn is crucial. Currently, a number of practices are recommended in perinatal and neonatal palliative care guidelines that are designed to help families to create me…
Memory-Making in Neonatal End-of-Life Care
Background: The loss of a child in the first hours or days of life is a profoundly distressing event for parents. Provision of appropriate psycho-social care for bereaved parents is critical. Current perinatal and neonatal palliative care guidelines recommend …
Mothers' experience of maternity and neonatal care when babies die: A quantitative study
BACKGROUND: The death of a newborn baby is devastating. While clinical issues may be a primary concern, interpersonal aspects can impact significantly. Mothers in this situation are not easy to access for research and little quantitative evidence is available.…
Neonatal mortality and associated factors in newborn infants admitted to a Neonatal Care Unit
INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal mortality and asso…
Neonatal palliative care: a practical checklist approach
OBJECTIVES: Following publication of detailed national neonatal palliative care guidance, practical regional guidance, in the form of multidisciplinary 'checklists', was implemented aiming to improve the quality of neonatal palliative care. METHODS: Case note …
Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scena…
Neurodevelopmental Outcomes of Infants Born at <29 Weeks of Gestation Admitted to Canadian Neonatal Intensive Care Units Based on Location of Birth
OBJECTIVE: To compare mortality and neurodevelopmental outcomes of outborn and inborn preterm infants born at <29 weeks of gestation admitted to Canadian neonatal intensive care units (NICUs). STUDY DESIGN: Data were obtained from the Canadian Neonatal Network…
Nurses' Experiences of End-of-life Photography in NICU Bereavement Support
PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected through a focu…
Nurturing Futility in the NICU: The Dutch Perspective
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opport…
Palliative care in a tertiary neonatal intensive care unit: a 10-year review
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision to redirect…
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who …
PARENTS 2 study protocol: pilot of Parents' Active Role and ENgagement in the review of Their Stillbirth/perinatal death
BACKGROUND: The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests tha…
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal com…
The impact of stillbirth on bereaved parents: A qualitative study
PURPOSE: To explore the lived experiences and personal impact of stillbirth on bereaved parents. METHODS: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born foll…
The Pepi-Pod study: Overnight video, oximetry and thermal environment while using an in-bed sleep device for sudden unexpected death in infancy prevention
AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous Maori mothe…
Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified …