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 551–575 of 4332 publications
"Invisible, you are letting go of a lot, and you would do it again": a qualitative interview study of the existential thoughts, feelings, and agency of healthy siblings with a sister or brother in palliative care in Denmark
Background: Having a sibling is one of the most significant relationships in life. Living with a life-threateningly ill sister or brother receiving palliative care affects the healthy siblings’ life in several ways. Healthy siblings often feel overlooked and n…
Is it Time to Rethink Pediatric Palliative Care Staffing to Optimize Access?
Excerpt
Over the last three decades, pediatric palliative care (PPC) has become a respected subspecialty service in children’s hospitals across the United States,1 supporting children with serious illness and their families in discerning of goals of care, maki…
"It seemed I was having a conversation with him": Posthumous Dignity Therapy case series
OBJECTIVES: Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating psychosocia…
"I Used to Feel my Child Was...the Property of the Hospital": An Examination of an Ethic of Care for Pediatric Home-Based Hospice and Palliative Care
Background: Home-based hospice and/or palliative care (HBHPC) is an important pediatric care modality offering continuity of care and a deeper understanding of patient and family needs. There is limited guidance to address multi-faceted approaches to care in h…
“I Wish No Child Died Like This”: Analyzing Responses from Parents of Babies Who Died of Complex Congenital Heart Disease in a Pediatric Intensive Care Unit
Background: The death of a child due to complex congenital heart disease (CCHD) in pediatric intensive care units profoundly affects families, often resulting in lasting grief and emotional distress. Despite advancements in pediatric palliative care (PPC), sig…
Keeping Hope for Dying Children and Their Families: The Experiences of Physicians and Nurses in Pediatric Oncology
Background: Hope plays a vital role in helping families navigate the challenges of pediatric cancer, fostering emotional resilience and treatment adherence, while cultural factors and healthcare professionals' strategies help keep it alive. This study explores…
Key factors in parental end-of-life decision making for surgical necrotizing enterocolitis: A Delphi study
Background/objectives: In severe cases of necrotizing enterocolitis (NEC) in preterm neonates, surgery may be the only option for survival. However, the consequences of active treatment are not always in the infant's best interest, urging parents and physician…
Knowledge and attitude of nursing students regarding pediatric palliative care in a teaching nursing institute
Background:
According to the World Health Organization, palliative care (PC) for children involves actively caring for the child’s health, mind, and spirit and supporting the family. Pediatric palliative care (PPC) is characterized as a comprehensive strategy …
Learnings from the establishment and delivery of the UK Collaborative Paediatric Palliative Care Research Network
Background: There are increasing numbers of children living with conditions that may threaten or shorten their lives. While child mortality has decreased in recent decades, it is estimated 4500 infants, children and young people (0-19 years) die in the United …
"Leave No Question Unanswered": Nurses' Role in Preparing Children's Families During End-of-Life Care
Background: Parents who report feeling prepared for symptoms and circumstances around their child's end of life report less adverse bereavement outcomes. Yet, the actions that bedside clinicians can initiate to help families feel prepared for a child's death r…
Legacy-making interventions in pediatric palliative care: A mixed methods systematic review
Objective: To identify existing legacy-making interventions for children in the context of palliative care, to evaluate the reported outcomes of these interventions, and to explore the perceptions and experiences of children, family members, and healthcare pro…
Legacy-Oriented Interventions for Supporting Family Bereavement and Psychosocial Adaptation in Pediatric Palliative Care: A Systematic Review
BackgroundLegacy-oriented interventions (LOI) are increasingly integrated into pediatric palliative care (PPC) to support children and their families during serious illness and bereavement. However, its impact on family grief and psychosocial outcomes remains …
Length of Stay by Pediatric Hospice Diagnoses: A Retrospective Experience from a Single Center
Context: Pediatric hospice provides care for children during the final stages of a terminal illness, usually defined as a prognosis of 6 months or less. There is limited data to inform hospice utilization in children among different hospice diagnoses.
Objecti…
Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease
Background: Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into routine pediatri…
Living with Loss: study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal death
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have a…
Looking beyond diagnoses to functioning: using the F words and personalizing care in neonatology
Extreme prematurity is associated with significant risk of mortality and morbidities. Neonatal follow-up assesses health outcomes of babies as they grow older to improve care and contribute to research and quality improvement initiatives. Recent investigations…
Losing a child with a severe developmental intellectual disability: Israeli mothers' accounts
Caring for a child with a severe developmental intellectual disability is often extremely challenging. Consequently, if such a child passes away, the grieving process may be complex. In the present study, we sought to characterize Israeli mothers' meaning (re)…
Making sense of pediatric death: An exploratory qualitative study of emotion management strategies applied by the pediatric intensive care unit interprofessional team
Background: Caring for children at the end of life is a reality of practice in the pediatric intensive care unit (PICU). Learning how to make sense of death at work, and the emotions it entails, is necessary for all PICU professionals.
Objective: To explore h…
Managing Expectations: Understanding Parents’ Perceptions of Their Child’s Serious Illness
Parenting a seriously ill child is complex and emotionally intense. To further develop Hinds and colleagues? Good Parent themes: ?Keeping a Positive Outlook? and ?Keeping a Realistic Outlook,? we reviewed grounded theories published in English language journal…
Managing moral distress and complex ethical challenges in the NICU
Background: In neonatology, end-of-life and complex ethical issues are frequent. This may lead to experiences of moral distress (MoD) for members of the clinical team. Here, we identify the causes, contributing factors, and contexts of MoD in the neonatal inte…
Managing the Uncertainty of "Precision" While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates
Each year, many neonates are born with genetic diagnoses that carry a range of prognoses. As the types and availability of genetic testing have expanded, neonatal intensive care units (NICUs) have served as "launching points" for their clinical application. Br…
Mapping of Children's Palliative Care Development Globally in 2023
Background: The demand for children’s palliative care is increasingly urgent, with over 21 million children worldwide needing access, yet only 5–10% currently receiving it. Mapping the development of children’s palliative care is important in tracking progress…
Maternal fetal medicine, obstetric, and neonatology perspectives on joint prenatal counseling at periviable gestational ages
Objective: To explore perspectives of maternal fetal medicine specialists (MFMs), obstetricians (OBs), and neonatologists (Neos) about antenatal counseling at periviable gestational ages and examine how those perceptions impact multidisciplinary counseling.
S…
Meaning-making Coping in Finnish Parents Following the Traumatic Death of a Child
Meaning-making is a crucial coping strategy for parents following a traumatic loss of their child and has been associated with better adjustment for parents dealing with such losses. However, meaning-making is often underexplored. The present study investigate…