This paper explores the challenges of resolving conflicting feelings around talking with a child about their terminal prognosis. When children are left out of such conversations it is usually done with good intent, with a parent wishing to protect…
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported…
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain…
Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s):…
Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children…
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with…
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…
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing…
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the…
The aim of this study was to understand children's cancer nurses experiences of providing palliative care in the acute hospital setting. Palliative care for children with cancer is rarely hospital- centred and predominately care is provided in the…
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes…
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S…
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical…
Introduction: 919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the…
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST)…
PURPOSE:
Termination of pregnancy without feticide (TOPWF) is poorly known in France and far less practiced than palliative care after term birth of a child having a lethal pathology. Few teams consider it and its practice remains confidential. This…
BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario…
OBJECTIVE: Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian…
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight…
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career…
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and…
OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline.…
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges…
More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon…
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families…
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal…
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to…
