Browse Items (1678 total)

INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and…

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…

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…

Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to…

Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal…

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…

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.…

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…

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…

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…

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.…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…
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