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 1–25 of 560 publications
A mixed-methods systematic review of interventions for parents during and after neonatal end of life in the neonatal intensive care unit
BACKGROUND: Parents of newborns at the end of life or after death require support to cope with the situation. AIM: This mixed-methods systematic review analyses various interventions designed to support parents in the neonatal intensive care unit. METHOD(S): A…
A Mother's Voice: The Construction of Maternal Identity Following Perinatal Loss
Background: Maternal identity, a mother's internalized view of self as mother, has not been studied in relation to perinatal loss. This study aimed to investigate how women construct a sense of maternal identity after the loss of a baby. Methods: We interviewe…
Before birth and beyond: Advance care planning in perinatal and neonatal palliative care - A scoping review
Background: Advance care planning is a core component of Palliative Care, yet how it is organized and used in practice remains variably described.
Aim: To map how advance care planning is put into practice within Perinatal/Neonatal Palliative Care and identif…
Change in maternal income status following stillbirth, neonatal death and severe neonatal morbidity
AIM: We evaluated whether stillbirth, neonatal death or severe neonatal morbidity is associated with a mother’s change in residential neighbourhood income between two consecutive births. METHODS: This population-based cohort included all mothers in Ontario, Ca…
Collaboration of an Obstetrical Residency Program With a Community Hospice/Bereavement Agency to Implement an Obstetrician Specific Educational Curriculum to Improve Care to Bereaved Families and Support Staff During Difficult Delivery Situations
Obstetricians face significant emotional and professional challenges caring for pregnant women experiencing fetal life-limiting diagnoses or fetal demise. Many physicians are uncomfortable offering the emotional support parents need during an unexpected end-of…
Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit
Background: Understanding the research experiences of bereaved parents is necessary to advance palliative care. Objective(s): To evaluate levels of and factors associated with bereaved parent comfort, benefit, and distress from research participation and to qu…
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 …
Cultural sensitivity and emotional resilience education improve infant health and wellbeing in end-of-life care in neonatal intensive care units
Parents of infants on neonatal intensive care units (NICUs) experience high levels of emotional distress, requiring emotional support from practitioners. Caring for critically ill infants requires high levels of emotional and technical skills that nursing and …
Current prenatal counseling of congenital heart disease in trisomy 18, pediatric cardiologists' perspective: a Fetal Heart Society Research Collaborative Study
Objective: Survival outcomes are shifting in trisomy 18 as cardiac disease is being repaired in infancy reminiscent of trisomy 21. The landscape of prenatal counseling related to cardiac disease and trisomy 18 is unknown.
Study design: A survey was distribute…
Effectiveness of an end-of-life family support nursing educational program in neonatal intensive care units
This study evaluated an educational program developed to support nurses' attitudes, knowledge, and skills for end-of-life (EOL) family support in Neonatal Intensive Care Units (NICUs). A quasi-experimental one-group pretest–posttest study design was used. Part…
End-of-life circumstances and unanticipated deaths in a neonatal intensive care unit: a retrospective analysis
Background
Despite major advances in neonatal intensive care, mortality in neonatal intensive care units (NICUs) remains a persistent reality. Most deaths now occur after withholding or withdrawing life-sustaining therapies (WWLST), yet some remain sudden or u…
Examining the relationship between neonatal nurses’ palliative care attitudes and compassion fatigue levels
Background Compassion fatigue may be associated with neonatal intensive care unit (NICU) nurses’ ability to provide quality palliative care. Understanding this relationship may contribute to the development of supportive strategies for neonatal nurses and neon…
Experiences of NICU Nurses Facing Perinatal Death: A Phenomenological Study
Background: Perinatal death in Neonatal Intensive Care Units (NICUs) represents one of the most emotionally challenging experiences for nurses. While parental bereavement has been widely studied, nurses’ experiences in neonatal end-of-life care remain insuffic…
Experience with difficult situations in perinatology: impact of empathy and death-related behaviors on stress in nurses and midwives
Objectives: Caring for newborns with life-limiting conditions represents one of the most demanding professional and emotional challenges for healthcare staff, particularly nurses and midwives. The aim of this study was to examine the relationship between empat…
Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencing
Rapid genomic sequencing (rGS) is increasingly used in neonatal and paediatric intensive care units (ICUs) to inform diagnosis and guide management of critically ill infants and children. Although rGS has a high diagnostic yield and potential to influence trea…
Expert collaboration for safe perinatal stabilization of neonates with select critical congenital heart defects at non-cardiac centers
Objective: To evaluate mortality and morbidity among neonates with select critical congenital heart defects (cCHD) delivered and initially managed at a Level-III perinatal center without in-house paediatric cardiac surgery, and to determine how many required i…
Exploring Parental Needs in the Year Following Perinatal Loss
Purpose: To explore parents' holistic needs in the year after a perinatal loss experience. Study Design and Method: We used Wagner's Chronic Disease Model viewed through a holistic lens as a theoretical framework for this qualitative descriptive study. Wagner'…
Extremely premature infant care: Reasonable progress or therapeutic fury?
Application of palliative comfort care versus neonatal intensive care for extremely premature births is a judgment fraught with uncertainty and risk, principally for the pregnant woman and family. Survival and good health are possible, but suffering, chronic h…
Father’s experience of fetal death: A secondary analysis
Following a fetal death, fathers have reported feeling a lack of support and minimizing their outward expression of grief. Further, in the period after pregnancy loss, there is evidence that non-birthing parents experience trauma, stress, anxiety, depression, …
Feasibility and acceptability of prenatal parental palliative care in congenital heart disease: a pilot study
Background
Ductal dependent congenital heart disease (ddCHD) is associated with significant parental anxiety, yet palliative care (PC) support is rarely offered in the prenatal period. While prior studies have evaluated PC postnatally, little is known about fe…
Fostering cultural humility in perinatal palliative care. An interpretative qualitative study from the United Kingdom
Research shows marked disparities in perinatal deaths across population groups in the UK. The aim of this study was to understand how perinatal palliative care is experienced by parents from culturally-diverse backgrounds and to understand the challenges facin…
Geographic Distance Between Perinatal and Pediatric Palliative Care Services and Implications for Practice Standards
Background: Practice standards recommend early integration of perinatal and pediatric palliative care (PC) with seamless transitions across settings. Little is known about the proximity between these services nationally. Methods: This study utilized data from …
Healthcare professionals' confidence in providing perinatal bereavement care for women and their families in low- and middle-income countries
Background/Aims: Perinatal death has a high burden in low- and middle-income countries. Inadequate care and support from healthcare professionals is a major factor in negative experiences and impacts parents' adjustment after stillbirth and neonatal death. Und…
Healthcare provider’s perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool
Background: Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize whe…
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