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 276–300 of 560 publications
"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German…
Advance care planning and informed consent in neonatology: A qualitative study on family and health care professional experiences
Background: The most commons situations of neonatal palliative care setting are 1) perinatal palliative care (do not reanimate order) and neonatal palliative care (limitations of intensive care). In this setting, Pediatric palliative care (PPC) has to adapt bo…
An ethical rationale for perinatal palliative care
Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal di…
Antenatal prediction models for short- and medium-term outcomes in preterm infants
Introduction: In extremely and very preterm infants, predicting individual risks for adverse outcomes antenatally is challenging but necessary for risk-stratified perinatal management and parents' participation in decision-making about treatment. Our aim was t…
A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents
OBJECTIVE: -Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. STUDY DESIGN: -This review discusses the l…
Assessment of parent understanding in conferences for critically ill neonates
Objectives
This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants.
Methods
We enrolled parents and clinicians participating in family conferences for infants with neurolo…
Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs…
Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions
Objectives
Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.
Methods
Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conduc…
Being a parent: Findings from a grounded theory of memory-making in neonatal end-of-life care
PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such memory-mak…
Beyond diagnostic yield: prenatal exome sequencing results in maternal, neonatal, and familial clinical management changes
Purpose: Previous studies have reported that prenatal exome sequencing (pES) can detect monogenic diseases in fetuses with congenital anomalies with diagnostic yields ranging from 6% to 81%, but there are few reports of its clinical utility. Method(s): We cond…
'Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, …
Decision-making in imminent extreme premature births: perceived shared decision-making, parental decisional conflict and decision regret
Objective: To describe levels of perceived shared decision making (SDM), decisional conflict (DC), and decision regret (DR) in prenatal counseling by pregnant women, partners, neonatologists, and obstetricians regarding decision-making around imminent extreme …
Evaluation of Care Providers' Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2…
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants an…
Factors affecting the grieving process after perinatal loss
Factors associated with the grief process in response to perinatal loss have been investigated. However, few studies focused on the intrapersonal factors, such as developmental and personality traits. Hence, this study aimed to investigate medical and psychoso…
Fifteen-minute consultation: How to approach the withdrawal of neonatal intensive care
Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It explores the pr…
From self-compassion to compassionate action: reflecting on ending life of stillbirth care in nursing
Nurses' distress in response to the professional experience of the neonatal loss and stillbirth care is poorly addressed in nursing practice; therefore, the purpose of this study is to explore nurses' experiences of labour of a stillborn baby. A qualitative ap…
Gaps in Palliative Care Education among Neonatology Fellowship Trainees
Background: To provide proper care for infants at risk for death, neonatologists need expertise in many areas of palliative care. Although neonatology training programs have implemented a wide variety of palliative care educational programs, the impact of thes…
Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care units
In Poland, guidelines for the management of ineffective treatment of children in neonatal and paediatric departments developed by the Polish Neonatal Society and the Polish Paediatric Society, have been published. The specific problems of futile therapy in pae…
Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training
Objective: The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. Study Design: A cross-sectional survey mixed-method design…
Implementing music therapy in a Norwegian neonatal intensive care unit
BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and parents' exp…
Improving Neonatal Intensive Care Unit Providers' Perceptions of Palliative Care through a Weekly Case-Based Discussion
Objective: The primary objective was to evaluate the efficacy of a weekly palliative care-guided, case-based discussion of high-risk infants on Neonatal Intensive Care Unit (NICU) physician (MD) and Advanced Practice Provider (APP) perceptions of pediatric pal…
Improving perinatal palliative care through e-learning
Aim: The highest number of paediatric deaths occur in the first month of life; 47% of deaths among children <5 years of age globally are in neonates. With more women undergoing prenatal testing, timely interventions are possible earlier & professionals need to…
Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as …
Informing mothers of neonatal death and the need for family-centered bereavement care: A phenomenological qualitative study
PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were identified fr…