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Background: Intestinal failure (IF) is a life-limiting condition that includes a variety of intestinal pathologies. Currently, there are few clinical biomarkers that reflect intestinal function or a patient's potential to wean off parenteral…
Background: In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do…
Background: Advances in medicine have altered the progression of several pediatric disorders. However, this progress also comes with medical, economic, and ethical challenges, which can negatively affect children's quality of life. Objective: This…
Background A growing number of pediatric patients admitted to the cardiac intensive care unit (CICU) meet the criteria of chronically critically ill (CCI), but there is little consensus on how to meet their distinct needs. A novel primary palliative…
Context: Documented goals-of-care (GOC) conversations promote goal-concordant care; few studies have evaluated the comprehensiveness of this documentation within pediatrics. Objective: To evaluate the content of pediatric GOC documentation within a…
Background: Compassion is central to neonatal end-of-life care, ensuring comfort and dignity for neonates with life-limiting conditions and their families. However, the emotional and ethical challenges faced by neonatal palliative care nurses,…
Excerpt Over the last three decades, pediatric palliative care (PPC) has become a respected subspecialty service in children’s hospitals across the United States,1 supporting children with serious illness and their families in discerning of goals of…
The prevalence of paediatric pain has increased and is a leading cause of hospital attendance. Non-pharmacological treatments for pain relief in paediatrics are experiencing a boom.Objective: to identify the effectiveness of non-pharmacological…
Problem: Perinatal bereavement can severely disrupt women's anticipated role as mothers, affecting their psychological wellbeing and identity as parents. Background: Existing research highlights many women report persistent and enduring grief for…
Abstract Genetic testing is rapidly becoming standard practice in the care of critically ill newborns within NICUs. Numerous studies have demonstrated the utility of genetic testing, including changes in clinical care, improved diagnostic certainty,…
Background: Pediatric palliative care (PPC) aims to alleviate suffering, improve quality of life, and facilitate decision-making for patients, families, and healthcare professionals. Specifically, PPC in neonatal patients influences their quality of…
Abstract The benefits of palliative care (PC) for hematopoietic cell transplant (HCT) patients are well established, however, uptake in pediatric HCT remains limited. To understand pediatric transplant physicians' attitudes towards PC, we conducted a…
Extract A global call to action was recently proposed to recognize sleep health as a foundation of human health [1]. The importance of good sleep and the negative impact of sleep deficiency on physical and emotional well-being have been extensively…
Objectives: In pediatric palliative care, effective communication is one of the most important skills. However, physicians often lack proper training. This study examines how to enhance medical students' ability to deliver a life-limiting diagnosis…
Background Disparities in specialist palliative care (SPC) are complex. Families of children and young adults with life-limiting conditions in digitally advanced areas have better access to health information and services. Objectives To examine SPC…
Children with complex care needs lack access to Specialized Pediatric Palliative care in Canada. At the same time, death is increasingly being handled in a mechanized and specialized manner, with hospitals becoming the expected place for death to…
This article offers an in-depth examination of the social worker's role in pediatric palliative care, focusing on their skills and scope of intervention. This study was conducted to understand perceptions of the social worker's contributions within a…
Context: Identifying when a child is suffering can be incredibly challenging. Understanding how the term 'suffering' is used in pediatric critical care - and specifically end of life care - is critical for clinical decision-making, communication, and…
Context Children and young people have a risk of medication errors and those with complex and/or life limiting conditions have a higher risk due to polypharmacy, complex medication regimens, and frequent transitions of care, often with multiple…
Objective: To identify existing legacy-making interventions for children in the context of palliative care, to evaluate the reported outcomes of these interventions, and to explore the perceptions and experiences of children, family members, and…
Purpose: This study explores the end-of-life care experiences of pediatric nurses in Turkey. Method: This study was conducted using the phenomenology design, one of the qualitative research designs. A total of 20 nurses participated in the study,…
Background: Globally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves. Objective: We aimed to determine…
Background Hope House Children's Hospice supports seriously ill children by offering respite, symptom management and end of life care across their two hospices which cover Shropshire, Cheshire, Powys, and North Wales. Combined the hospice's reach…
Background: In neonatology, end-of-life and complex ethical issues are frequent. This may lead to experiences of moral distress (MoD) for members of the clinical team. Here, we identify the causes, contributing factors, and contexts of MoD in the…
Abstract Introduction and objective: The article aims to formulate criteria determining the right moment to discontinue life support to a terminally ill child at the end of life. The argument refers to two standards guiding critical decision-making:…
Background: Home-based health technologies for paediatric palliative care have great potential to improve care for children, caregivers, healthcare professionals, and health systems. However, no systematic reviews have directly addressed the…
Background: Communicating with a parent or guardian after their child's death is considered one of the most difficult tasks in medicine. While several frameworks have been developed to aid clinicians when delivering bad news, they are incomplete…
Objectives: To explore health professionals' experiences of contested pediatric brain death/death by neurologic criteria (BD/DNC) cases, including factors contributing to conflict, resource needs and utilization, perceived utility of supports…
Objectives: The field of pediatric palliative care (PPC) has grown in the last few years because of increased awareness of the unique requirements of children at the terminal stage. In this study, we aimed to analyze the willingness and confidence of…
Chronic pain disproportionately affects autistic children and young people, yet they are underrepresented in pain research. Research on psychological, physical, and pharmacological therapies for other conditions suggests modifications are required to…
Despite bringing great strengths and facing substantial health inequities, disabled people remain underserved by health research; addressing this requires multi-level actions spanning all areas of research.
In Buddhism, preserving life at all costs is generally discouraged, and to prolong life without hope for cure or recovery stems from the sins of delusion and worldly attachment. When an infant's death is imminent, Buddhist parents often prioritize…
Objective: This study developed and evaluated a structured, 8-week community-based resilience group intervention for Chinese parents who have lost their only child and exhibit extended bereavement and suboptimal levels of resilience. Method: Eighty…
While pediatric hospice and palliative medicine as a field have experienced enormous growth over the past twenty years, much work remains to be done, including establishing best practices and guidelines for provision of home-based palliative care and…
Perinatal death is a devastating loss for parents, often exacerbated by the lack of social support. There is accumulating evidence that perinatal bereavement photography is a valuable memory-making tool to support parents experiencing perinatal loss.…
There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal…
Critical illnesses encompass a wide range of serious and life-threatening conditions that often require intensive care, including advanced life support, complex procedures, and prolonged stays in healthcare facilities. Palliative care has been…
Background: To achieve benefits of person-centred outcome measures within routine children's palliative care, implementation plans and the intended pathways to impact must be established. Aim: To develop a Theory of Change and Implementation Plan for…
This paper briefly describes the development of the Resilient Parenting for Bereaved Families program (RPBF) and presents an evaluation of adding the RPBF to usual care (UC) provided by community agencies supporting families of bereaved children. The…
Introduction: Family caregivers of children receiving pediatric palliative care (PPC) play a crucial role in their care and wellbeing, especially during the early stages of life. Objective: To explore the experience of family caregivers of children…
