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 201–225 of 560 publications
Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
Objective
To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care.
Methods
A retrospective observational study including all patient mor…
Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consul…
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked…
Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demogr…
Maternal-fetal surgery as part of pediatric palliative care
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life wit…
Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prol…
Need for palliative care from birth to infancy in pediatric patients with neurological diseases
BACKGROUND: Palliative care is a comprehensive treatment approach that guarantees comfort for pediatric patients and their families from diagnosis to death. The techniques used for neurological patients in the field of palliative care can enhance the quality o…
Neonatal euthanasia in the context of palliative and EoL care
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia became an opti…
Neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care: review of the literature
AIM: To review studies regarding neonatal nurses' knowledge and attitude toward neonatal palliative care (NPC). METHOD: The researchers searched internet sources such as Google Scholar for NPC, Nurses, Knowledge, Attitude, and Educational Intervention. RESULTS…
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kin…
Neonatal palliative care: Assessing the nurses educational needs for terminally ill patients
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neo…
Neonatal serious illness: operational definition
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. MET…
Paediatric palliative care in the NICU: A new era of integration
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles…
Palliative Care Family Support in Neonatology
In this chapter we will describe the evidence for palliative care family support beginning in the prenatal period and extending to acute and chronic neonatal intensive care unit (NICU) care and finally to bereavement. Neonatal providers have the unique opportu…
Palliative care for NICU survivors with chronic critical illness
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic med…
Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education. D…
Parents' hope in perinatal and neonatal palliative care: a scoping review
Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, surviv…
Perinatal Palliative Care: Additional Costs of an Interprofessional Service and Outcome of Pregnancies in a Cohort of 115 Referrals
Abstract
Background: An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option.
Objective: To (1) determine the profile characterist…
Perinatal palliative care: focus on comfort
Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we …
Role of palliative care in centers performing maternal-fetal interventions
Advancements in maternal-fetal interventions have allowed for direct fetal access, shifting the focus of interventions from maternal health for fetal health to a focus on sole fetal/neonatal benefit. Given that access to the fetus can only be obtained through …
Siblings and End-Of-Life Decision Making in the NICU
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the …
Silent Tears of Midwives: 'I Want Every Mother Who Gives Birth to Have Her Baby Alive'-A Narrative Inquiry of Midwives Experiences of Very Early Neonatal Death from Tanzania
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being.
Research ai…
Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the an…
Spiritual and cultural influences on end-of-life care and decision-making in NICU
Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the religious/philosophical…
The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may mak…