IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To…
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with…
Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and…
Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents…
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to…
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5…
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…
Context Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well…
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education…
Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan…
Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore…
Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in…
BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but…
ABSTRACT Context Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and…
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from…
Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to…
Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors…
Problem Compassion Fatigue (CF) in healthcare professionals has been explored in multiple studies, but few focused on hospital-based pediatric nurses. The purpose of this integrative review is to synthesize the evidence about CF prevalence in nurses…
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on…
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health…
Introduction The children and young people who utilise hospice services often have additional oral health care needs and may present with additional challenges in regard to mouth care. Hospice colleagues need support and would benefit from national…
PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed…
Objectives: To describe the reasoning processes used by pediatric intensivists to make antibiotic-related decisions. Design: Grounded theory qualitative study. Setting: Three Canadian university-affiliated…
CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate…
BACKGROUND: The use of cannabis for medical purposes by pediatric patients is expanding across Canada; however, supporting evidence, federal regulations and treatment guidelines are lacking. To understand factors affecting treatment decisions in this…
BACKGROUND: Patient and family engagement is thought to improve the quality and relevance of child health research. We developed and evaluated the usability of Patient Engagement 101, an e-learning module designed to strengthen the patient-oriented…
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17…
Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than…
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at…
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide…
Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared…
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected…
INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International…
Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.…
Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term…
Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement…
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a…
