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 226–250 of 560 publications
Windmills and Pediatric Palliative Care
A Review of Pediatric Care: A Model for Exemplory Practice
This book i sbased on research across three settings where children with complex, chronic, and potentially life-threatening conditions are often cared for: neonatal intensive care, oncology units and …
'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM: To increa…
Addressing bias and disparities in periviable counseling and care
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also neces…
A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery.
STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation part…
Attitudes Toward Neonatal Palliative Care Among Turkish Nurses and Physicians: A Comparative Cross-sectional Study
Few studies have examined and compared neonatal physicians' and nurses' attitudes toward palliative care. This comparative study sought to evaluate attitudes toward neonatal palliative care in neonatal nurses and physicians and identify associated facilitators…
Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal int…
Bereavement Support for Siblings after Neonatal Loss: an Online Survey of U.S. Training Centers
OBJECTIVE: The aim of this study was to examine bereavement support for siblings of patients who die in the neonatal intensive care unit (NICU) given the adverse effects of unprocessed grief and the paucity of information on children whose newborn siblings die…
Care Intensity and Palliative Care in Chronically Critically Ill Infants
ABSTRACT Context Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following …
Clinical practice guidelines for perinatal bereavement care: A systematic quality appraisal using AGREE II instrument
PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed a systema…
Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?
INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines…
Eligible neonatal donors after circulatory determination of death (Maastricht type III): A national survey of level III NICUs
BACKGROUND: Organ donation continues to increase worldwide, but in general paediatric patients remain less likely to receive a transplant. The inclusion of neonates as donors after cDCD should be considered in an effort to increase donation rates.
METHODS: The…
End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom
Background
Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The curre…
End-of-life care over four decades in a quaternary neonatal intensive care unit
Aim Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for many newbor…
End-of-Life Decision Making Between Doctors and Parents in NICU: The Development and Assessment of a Conversation Analysis Coding Framework
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in tw…
Ethical decision-making climate, moral distress, and intention to leave among ICU professionals in a tertiary academic hospital center
BACKGROUND: Commentators believe that the ethical decision-making climate is instrumental in enhancing interprofessional collaboration in intensive care units (ICUs). Our aim was twofold: (1) to determine the perception of the ethical climate, levels of moral …
Ethical Issues around Death and Withdrawal of Life Support in Neonatal Intensive Care
Amongst all the traumatic experiences in a human life, death of child is considered the most painful, and has profound and lasting impact on the life of parents. The experience is even more complex when the death occurs within a neonatal intensive care unit, p…
Extremely Preterm Babies-Legal Aspects and Palliative Care at the Border of Viability
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts describe th…
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a inte…
Finding a New Normal: Maternal Experiences Transitioning to Home From the Neonatal Intensive Care Unit Caring for Technology-Dependent Infants
Background:
Infants discharged from the neonatal intensive care unit (NICU) dependent on medical technology (eg, respiratory or nutritional support) are a growing vulnerable population. These infants are medically fragile, prone to emergency department visit…
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
Purpose
Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retr…
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff…
Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis
Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care …
Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implicat…