Browse Items · Pediatric Palliative Care Library

Survival, short-term morbidity of extremely low gestational age infants and their predictors

BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide…

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement

Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal…

Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation

Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were…

Max's legacy: an evaluation of the impacts of baby loss on staff and families

Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…

Fatal fetal anomaly: Experiences of women and their partners

OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth…

Tags: 2023, Adaptation, Psychological, August List 2034, Dennehy R, Female, Grief, Humans, Jackson P, Male, O'Donoghue K, Palliative Care, Parents, Power-Walsh S, Pregnancy, Prenatal Diagnosis, Qualitative Research, Quality Of Health Care

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of…

Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death

Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and…

Overview of Perinatal Palliative Care in Brazil

Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure,…

Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease

Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…

Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment…

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.…

Tags: 2022, Diseases, Family psychology, Female, fetal, Humans, Humphrey LM, Infant, Newborn Palliative Care, October 2022 List, Parents, Perinatal Care, Pregnancy, Prenatal Diagnosis, Psychology, Schlegel AB, Seminars In Pediatric Neurology

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…

Tags: 2022, Adult, Attachment, Calvo V, Children, Death, Female, fetal, firstborn, Humans, Mother-child Relations, Mothers, October 2022 List, Omega, Pregnancy, Qualitative Research, Saccardo C, subsequent

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…

Tags: 2022, August 2022 List, Bias, Child, Counseling, Female, Humans, Infant, Newborn, Perinatal Care, Pregnancy, Schmidt A, Seminars in Perinatology, Tucker Edmonds B, Walker VP

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…

Tags: 2022, April 2022 List, Child, Critical Care Nursing Clinics Of North America, Female, Hospice And Palliative Care Nursing, Humans, Infant, Infant Newborn, Infant Newborn Diseases, Intensive Care Units Neonatal, Maher-Griffiths C, Memory Making, Neonatal Palliative Care, Palliative Care, Perinatal Care, Perinatal Palliative Care, Pregnancy, Resilience

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.…

Creating a safe space': how perinatal palliative care coordinators navigate care and support for families

BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these…

Tags: 2021, Care coordinator, Case Management, Côté-Arsenault D, Curriculum, December 2021 List, Delivery of Health Care, Denney-Koelsch E, Elliott G, Family, Fetal Diagnosis, Grief, International Journal of Palliative Nursing, Newborn Infant, Palliative Care, Perinatal Care, Perinatal Palliative Care, Pregnancy, Qualitative Research

Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…

Perinatal palliative care: a dedicated care pathway

OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment,…

Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey

AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses…

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal…

Tags: 2020, Acharya K, Advances in Neonatal Care, Counseling/ethics/methods, Female, Humans, Infant Newborn, Leuthner SR, May 2021 List, Palliative Care/ethics/methods/psychology, Parents/psychology, Pregnancy, Prenatal Diagnosis/methods/psychology, Psychosocial Support Systems, shared decision making, Trisomy 13 Syndrome/diagnosis/psychology/therapy, Trisomy 18 Syndrome/diagnosis/psychology/therapy

The grief ritual of extracting and donating human milk after perinatal loss

Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to…

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal…

Tags: 2020, Decision-making, Decisions, Frontiers in Pediatrics, January 2021 List, life-limiting fetal diagnoses, Marc-Aurele KL, perinatal palliative care (PPC), Pregnancy

Effectiveness of psychotherapeutic interventions on psychological distress in women who have experienced perinatal loss: a systematic review protocol

Background: Perinatal loss is a traumatic and complex experience that contributes to negative maternal psychological states and adverse outcomes impacting fetal development, maternal-fetal/infant bonding, marital/partner relationships, and child…

Extending the Concept of Advance Care Planning to the Perinatal Period

Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a…

Tags: 2020, August 2020 List, birth plan, Garten L, Klinische Pädiatrie, Krones T, life-limiting disease, Neonate, Palliative Care, Pregnancy, prenatal counselling, Strahleck T, von der Hude K

Healthcare professionals' experiences of perinatal loss: A systematic review

Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences,…

Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature

BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to…

Tags: 2019, Abortion, Birth, Blakeley C, Bmc Medical Ethics, Continuation, Disorder, Johnstone E D, Life-limiting, October 2019 List, Pregnancy, Smith D M, Termination, Wittkowski A

Decision-making at the limit of viability: The Austrian neonatal choice context

Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and…

Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen

Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification…

Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala

Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study

Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis

BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…

Birth weight percentile and the risk of term perinatal death

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

Palliative care for the family carrying a fetus with a life-limiting diagnosis

Prenatal diagnosis of a lethal anomaly is a monumental moment in a family's life. It requires extensive team counseling and planning about complex neonatal and obstetric medical management. The construct of palliative care with its focus on…

Hospital care for parents after perinatal death

OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third…

Age limits and transition of health care in pediatric emergency medicine

OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…

Endotoxin has acute and chronic effects on the cerebral circulation of fetal sheep.

We studied the impact of endotoxemia on cerebral blood flow (CBF), cerebral vascular resistance (CVR), and cerebral oxygen transport (O(2) transport) in fetal sheep. We hypothesized that endotoxemia impairs CBF regulation and O(2) transport, exposing…

Management of acute asthma in adults in the emergency department: nonventilatory management

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

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