INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the…
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of…
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be…
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting…
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted…
Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care…
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for…
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.…
Historically, the goal of care in a pediatric or neonatal intensive care unit was to do everything medically possible to cure illness or prolong life. When curative therapies were no longer appropriate, the approach was to turn to end-of-life care.…
Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective(s): Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days…
Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and…
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster…
BACKGROUND: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. AIMS: To describe the…
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life.…
Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To…
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and…
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international…
This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group…
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural…
Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of…
To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration…
The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources…
BACKGROUND: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. CASE PRESENTATION: We…
Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This…
INTRODUCTION: Little is known about the requests for and recommendations from inpatient pediatric palliative care (PPC) consults and whether they differ by patient location (ward vs. intensive care unit) or patient type (new vs. established with…
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular…
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data…
CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To…
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care,…
Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method(s): A…
Background: Acute pain is common in children and young adults with cancer and sickle cell disease. Current training curricula fail to adequately impart skills for pain management. We sought to develop and validate an education and assessment tool to…
BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the…
CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom…
OBJECTIVE: This study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses' knowledge and attitude regarding PPC for children facing…
Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by…
Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and…
Care for pediatric patients with serious or potentially life-limiting illness involves the interplay of multiple medical and surgical teams within the hospital. Pediatric surgeons are capable of performing procedures that can improve the quality of…
Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support…
