Browse Items · Pediatric Palliative Care Library

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns…

Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care

Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…

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…

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement

BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was…

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…

Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review

Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our…

"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care

Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…

Children's complex health: Maternal experiences of care and decision making

An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to…

Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals

OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.…

Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context

OBJECTIVES: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets…

Timing of palliative consultation for children during a fatal illness

Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care…

Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams

Abstract Context: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently…

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level…

End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Abstract Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics…

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020

Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were…

Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care

Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a…

Talking about the End of Life, Death and Bereavement with Children's Literature

Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are…

Tags: 2022, Adolescent, Adult, April List 2023, Article, Bereavement, Child, Female, Human, Major Clinical Study, Male, mourning, Only Child, Palliative Therapy, Psycho-Oncology, Terminal Care, Tete C

How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death

Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that…

Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…

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…

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…

Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?

The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand…

Tags: 2023, April List 2023, Brain Death, Child Preschool, Consent, Diagnosis, Dissent And Disputes, Eisenberg LR, ethical issues, Ethics Medical, Female, Intracranial Pressure, Neurologic Examination, Parental Attitudes, Resuscitation Cardiopulmonary, The American Journal Of Bioethics

Social Workers in Pediatric Intensive Care Units: A Physician Perspective

Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…

Shared Spiritual Beliefs between Adolescents with Cancer and Their Families

BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…

Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer

Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19…

Longitudinal Understanding of Prognosis among Adolescents with Cancer

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative…

Polypharmacy among Pediatric Cancer Patients Dying In the Hospital

BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life…

Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…

The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa

In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…

Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean

In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…

Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?

OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents

Neonatal Palliative Care Practices: An Indian Perspective

Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe…

Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?

Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at…

Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease

Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…

Challenges in Establishing Optimal Pediatric Palliative Care at the University Hospital in Slovenia

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload

There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care.…

Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…

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