Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1826–1850 of 4332 publications
Perinatal palliative care
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is del…
Perinatal Palliative Care in the Neonatal Intensive Care Unit
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires educ…
Personalized support of parents of extremely preterm infants before, during and after birth
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families th…
Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence
BACKGROUND: With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the…
Physician Perceptions of Palliative Care for Children With Cancer in Latin America
Importance: The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (P…
Pictures as mementos after perinatal death: a case study
BACKGROUND: The grieving process following perinatal loss caused by life-limiting conditions presents some particularities associated with the family's culture and the symbolic relationship with the deceased.
OBJECTIVE: To reflect on the symbolic meaning attri…
Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex…
Postdischarge health resource use in pediatric survivors of prolonged mechanical ventilation for acute respiratory illness
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations of mechanic…
Potential contributing factors for irritability of unknown origin in pediatric palliative care
BACKGROUND: In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood. MEASURES: A structured IUO diagnostic an…
Predicting Time to Death After Withdrawal of Life-Sustaining Treatment in Children
Accurately predicting time to death after withdrawal of life-sustaining treatment is valuable for family counseling and for identifying candidates for organ donation after cardiac death. This topic has been well studied in adults, but literature is scant in pe…
Prevalence of Children With Medical Complexity and Associations With Health Care Utilization and In-Hospital Mortality
IMPORTANCE: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health initiatives…
Primary Caregivers Caring for a Child at End of Life in Saudi Arabia
BACKGROUND: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to manage the impa…
Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST process in pedia…
Provider Perceptions on Bereavement Following Newborn Death: A Qualitative study from Ethiopia and Ghana
Objective To explore how clinicians in low- and middle-income countries engage and support parents following newborn death. Study Design Qualitative interviews of 40 neonatal clinicians with diverse training were conducted in Addis Ababa, Ethiopia and Kumasi, …
Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms…
Psychosocial Support within the Context of Perinatal Palliative Care: The "SORROWFUL" Model
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected f…
Qualitative Study of Paediatric Advance Care Planning Through Simulation: How We Did It and the Lessons Learned
Background/aims: Simulation allows clinicians to experience a replication of reality, enabling feasible and ethical study of complex phenomena, such as communication and care around the end of life. There is a paucity of literature describing how to design a s…
Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators
Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient end-of-lif…
Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication…
Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants
BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW, <1500 g) infants. METHODS: This retrospective, cross-sectional analysi…
Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review
Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palli…
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the borde…
Reflecting on palliative care for children, young people and their families: a revised model
The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided…