Browse Items (25 total)

Introduction: In extremely and very preterm infants, predicting individual risks for adverse outcomes antenatally is challenging but necessary for risk-stratified perinatal management and parents' participation in decision-making about treatment. Our…

BACKGROUND: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program…

Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research…

BACKGROUND: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments…

BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the…

Multiple studies among adults have suggested a non-linear relationship between arterial partial pressure of oxygen (PaO(2)) and clinical outcomes. Meta-analyses in this population suggest that high levels of supplemental oxygen resulting in hyperoxia…

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more…

BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely…

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their…

CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical…

Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous…

BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the…

Pharmacogenomic (PGx) testing provides preemptive pharmacotherapeutic guidance regarding the lack of therapeutic benefit or adverse drug reactions of PGx targeted drugs. Pharmacogenomic information is of particular value among children with complex…

Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to…

CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care.…

Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative…

BACKGROUND: One of the main challenges for paediatric palliative care (PPC) is the management of concomitant, different and severe symptoms that frequently affect the quality of life of PPC patients and are often refractory to commonly used…

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a…

BACKGROUND: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not…

The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at…

Objectives This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. Methods We enrolled parents and clinicians participating in family conferences for infants…

* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…

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.…
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