BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how…
Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative…
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating…
BACKGROUND: Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been…
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a…
BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice…
Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the…
BACKGROUND: The Quality of Care Collaborative Australia (QuoCCA), working across 6 tertiary centers throughout Australia, builds capability in the generalist and specialist pediatric palliative care (PPC) workforce, by providing education in…
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia…
OBJECTIVE: Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics…
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely…
Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI…
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to…
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of…
