Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…
Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for…
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18…
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for…
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.…
Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Introduction As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare…
Context: Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention.Objectives: The objectives were to examine the prevalence…
Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are…
Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and…
This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total…
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific…
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions…
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young…
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to…
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control.…
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is…
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other…
The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition…
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in…
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate…
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the…
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…
An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the…
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their…
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which…
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the…
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life…
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to…
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…
OBJECTIVES: This article focuses on compassionate discharge from an ICU setting for pediatric patients. DATA SOURCES: Not Applicable. STUDY SELECTION: Not Applicable. DATA EXTRACTION: Not Applicable. DATA SYNTHESIS: The rationale for compassionate…
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with…
