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 251–275 of 560 publications
Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses
Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values. The inclu…
Moral equivalence theory in neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rat…
Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive car…
NICU nurses' moral distress surrounding the deaths of infants
BACKGROUND: As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients' deaths and consequently experience burno…
Nurses' involvement in end-of-life decisions in neonatal intensive care units
BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To investigate neonatal…
Palliative care nurse: A quantitative study of caring for neonates at end-of-life stage
Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the existing standard…
Parents' Needs and Their Perceived Obstacles With Team Members in Perinatal Palliative Care: A Qualitative Phenomenological Study
Advances in prenatal diagnosis have made medical, psychological, and ethical issues regarding the diagnosis of fetal anomalies a crucial topic of research. This study identified the needs of parents of unborn babies with fetal anomalies and their views regardi…
Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literatur…
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…
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…
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…
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…
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinici…
Relational Sequelae of Fetal Death During the First Pregnancy: A Qualitative Study on the Subjective Perceptions of the Relationship Between Mothers and Their Adult Subsequent Firstborn Children
Perinatal loss may deeply affect the attachment relationships of mothers and their next-born children. The aim was to explore the subjective perceptions of mothers, who had fetal death during the first pregnancy, and their adult subsequent firstborn children r…
Sibling Grief over Perinatal Loss—A Retrospective Qualitative Study
Grief over perinatal loss is a personal experience that has a lasting impact on the life of the surviving siblings. This retrospective study is an in-depth exploration of the symbolic construction of the bond with the lost sibling employing Interpretative Phen…
The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses
BACKGROUND: This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses. METHOD(S): The research started with a sco…
The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey
INTRODUCTION: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or…
The Value of DNR Orders in the NICU: The Medical Staff Perspective
Purpose of Study In adults, code status and DNR orders have been established as an explicit guideline and are considered a component of the standard of care in the provision of quality end-of-life care. As most neonatal deaths occur after withdrawal of life-su…
Trauma Informed Ethics Consultation
We argue for the addition of trauma informed awareness, training, and skill in clinical ethics consultation by proposing a novel framework for Trauma Informed Ethics Consultation (TIEC). This approach expands on the American Society for Bioethics and Humanitie…
Uncertainty and Perinatal Post‐Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post‐traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertaint…