PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the…
Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the…
Adolescents and young adults 15 to 25 years of age with incurable cancer are a unique patient group. There is growing evidence of the emotionally taxing nature of this work, yet limited understanding of the health care professional experience across…
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: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death…
BACKGROUND:: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. OBJECTIVE:: To examine what factors determine the degree of knowledge and level of…
PURPOSE: This study was designed to report information regarding symptomology of incurable pediatric cancer to promote proactive medicine and support for children and their families in the palliative phase in Mainland China. METHOD: A multi-center…
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to…
The loss of an only child is one of the most painful life events and creates tremendous change in its parents' lives. Analyzing parents' online language use may help to better understand their loss, especially their psychological process. This study…
There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to…
Introduction Issues: Until recently, Paediatric Palliative Care in Uganda was ignored, with less than 5% of patients seen at Hospice Africa Uganda being Paediatric patients. African Palliative Care Association (APCA) and Palliative Care Association…
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in…
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices…
PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what…
OBJECTIVE: To assess clinical presentation of inborn errors of metabolism in neonatal period and to identify challenges in their management. METHODS: This is a retrospective study carried out in the department of Intensive Care and Neonatal Medicine…
Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients…
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23…
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices…
BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration.…
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a…
BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the…
Introduction: IFiReaPed study is a prospective ongoing study about perceptible end-of-life signs in Paediatric Intensive Care Unit (PICU). IFiReaPed main hypothesis is that a better information of parents about those perceptible end-of-life signs…
OBJECTIVES: Adolescents and young adults with life-limiting or life-threatening conditions are often socially isolated because of the demands of their illness. Although adolescents and young adults have a noticeable online and social media presence,…
Background Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other…
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New…
Objectives To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services…
CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better…
Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The "Together for Short Lives" (TfSL) association established four disease categories, which represent the most common illness trajectories. Better…
BACKGROUND: Urea cycle disorders (UCD) are rare inherited metabolic disorders caused by deficiencies of enzymes and transporters required to convert neurotoxic ammonia into urea. These deficiencies cause elevated blood ammonia, which if untreated may…
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the…
PURPOSE: To provide an up-to-date summary of the benefits and harms of cannabis-based products for epilepsy in children. METHODS: We updated our earlier systematic review, by searching for studies published up to May 2019. We included randomized…
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative…
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase…
PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.
BACKGROUND: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric…
While the rare occurrence of child loss is accompanied by reduced life expectancy of parents in contemporary affluent populations, its impact in developing societies with high child mortality rates is unclear. We identified all parents in Iceland…
OBJECTIVES: This study considers whether experiencing the death of a child prior to midlife (by parental age 40) is associated with subsequent dementia risk, and how such losses, which are more common for black than for white parents, may add to…
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was…
