Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children…
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional…
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown…
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…
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S…
AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources,…
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…
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career…
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help…
BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region,…
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for…
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible.…
AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched…
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with…
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…
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences…
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…
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical…
BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted…
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…
CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the…
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and…
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded…
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and…
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…
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To…
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…
BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care,…
BACKGROUND: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and…
BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about…
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening…
Objective: An enormous need for pediatric palliative care (PPC) has been reported, especially in low- and middle-income countries (LMICs). However, the access to PPC is limited. This study identifies the current challenges in the provision of PPC and…
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to…
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…
Aim To determine baseline learning needs of Paediatricians in Ireland when caring for children with palliative care needs. Methods A questionnaire based online survey was conducted. Results One hundred and fourteen paediatricians responded to the…
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care…
OBJECTIVE: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. METHODS: Anonymous validated surveys were…
