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 1–18 of 18 publications
Circle of light education model: Death education for children in end of life care
This study delves into the Circle of Light educational framework, focusing on death education for children receiving end of life care. It highlights the importance of such education in fostering psychological and spiritual well-being and alleviating death-rela…
Culturally Informed Communication of Neonatal Death in Chinese Neonatal Intensive Care Units
This qualitative study describes the experiences of physicians and nurses about communicating with parents about neonatal death at 2 neonatal intensive care units (NICUs) in 2 hospitals in Yangzhou City, Jiangsu Province, China. Key Points: Question: What are …
Pediatric intensive care nurses' perspectives on the quality of dying and death among hospitalized children: A Cross-Sectional Study
Background: Nurses are continuously present at the bedside and work closely with both children and families; therefore, their perspectives can provide a detailed understanding of end-of-life care. This study examined the quality of dying and death among hospit…
Experiences of Nurses and Midwives Who Support Bereaved Parents During Perinatal Deaths in Ghana: A Descriptive Phenomenological Study
IntroductionGlobally, perinatal death presents a profound challenge for healthcare and healthcare professionals, requiring enormous clinical expertise and mental fortitude. The complexity involved in balancing professionalism, empathy, and the human face pose …
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
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 incidences …
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates…
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
Despite the high rate of infant mortality in Ghana, few studies have explored the maternal experience of infant loss and the perinatal grieving process. As part of a larger study that interviewed 153 mothers with a sick infant, this 1-year follow-up study rein…
The spiritual needs of seriously ill children and their families
Background Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.
The Tragic Case of Charlie Gard
This Viewpoint summarizes the case of Charlie Gard and discusses implications of the court decision.
Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health
Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children w…