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: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have…
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.…
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate…
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible.…
OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice…
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising…
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is…
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how…
Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that…
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS.…
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.…
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…
With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require…
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital,…
BACKGROUND: We investigated the clinical characteristics that represent risk factors for death in pediatric patients with mitochondrial diseases. METHODS: The medical records of mitochondrial disease pediatric patients attended between 2006 and 2015…
Background Palliative care for children is an innovative approach that helps improve the quality of life of children suffering from life-limiting illnesses, and their family members. The WHO recognized palliative care as a part of universal health…
Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant…
Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital…
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…
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…
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health…
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and…
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African…
Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review…
BACKGROUND: Children's books have the potential to facilitate communication about death for children living with a serious illness and for children coping with the death of a loved one. OBJECTIVES: This study examines the content of children's…
BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple…
Abstract
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…
Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…
Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and…
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative…
