CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective…
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…
BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations…
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…
The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’…
Sleep disorders are common in NCL patients, The patients have problems such as frequent awakenings, difficulties with sleep onset, nightmares, and night terrors, The aim of the study was to examine whether the sleep disturbance in NCL can be…
BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying…
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…
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in…
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from…
Background: Community health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence from LMICs regarding (1)…
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training,…
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders. AIM:…
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of…
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's…
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
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1)…
Background: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries.…
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…
Recent studies have shown that rates of depression and anxiety symptoms are elevated among individuals with autism spectrum disorders (ASDs) of various ages and IQs and that depression/anxiety symptoms are associated with higher IQ and fewer ASD…
Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting…
OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The…
Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world.…
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for…
BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may…
Esophageal stricture is one of the most common gastrointestinal complication in epidermolysis bullosa patients. We describe the technique of esophageal stricture dilatation, with a focus on safety and procedural modifications. Case series of 6…
Introduction: In certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: To describe characteristics…
Aim: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. Method(s): We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural…
Abstract Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as…
BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children.…
BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in…
Cornelia de Lange syndrome is reported to be associated with self-injurious behavior (SIB) and social avoidance. We used analog methodology to examine the effect of manipulating adult social contact on social communicative behaviors and SIB in 16…
BACKGROUND: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits…
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This…
OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged…
Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death.…
Aim of the study: To assess the efficacy and safety of endoscopic balloon dilatation of esophageal strictures in children. Material and methods: Design: retrospective case series; population: 49 patients under 18 years of age referred to our center…
We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers,…
Objectives: To evaluate the prevalence of do-not-resuscitate status, assess the epidemiologic trends of do-not-resuscitate status, and assess the factors associated with do-not-resuscitate status in children after in-hospital cardiac arrest using…
