INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal…
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is…
Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD…
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35…
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…
Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe…
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance.…
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital,…
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative…
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS.…
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…
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and…
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London…
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of…
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE:…
OBJECTIVES: Our aim in this study was to understand usage patterns of pediatric palliative care (PPC) consultation and associations with end-of-life preparation among pediatric patients who are deceased. METHODS: We reviewed 233 pediatric…
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.…
Objectives *Explain the rationale for incorporating telemedicine into the care of palliative care patients and its associated benefits. *Describe common challenges, proven strategies, and best practice recommendations for successful and sustainable…
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom…
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity…
Objectives *Identify 3 barriers to the provision of care in rural areas for children with life-limiting illnesses and their families. *Describe 3 approaches to improving the provisions of care in rural areas for children with lifelimiting illnesses…
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical…
Introduction: Pediatric surgeons are often involved in the management of severely or terminally ill patients. However, articles addressing their specific roles in the context of palliative care are almost inexistent. We sought to characterize the…
Objectives * Identify a simple, effective way to facilitate selfcare among hospital team members. * Describe the impact story time has had on the attendees' daily practice and self-care strategies. Background. Story time was born out of a photograph…
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet…
BACKGROUND: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time…
Objectives * Establish the need for a caregiver intervention. * Introduce the intervention and its components. * Disseminating findings from the piloting of this intervention. Informal caregiving, or care provided by an unpaid individual to an adult…
Objectives * Describe two benefits of a web-based educational tool for parents of children with serious illness and clinicians who care for them. * List three common themes explaining what is most important to parents of seriously ill children in…
