Browse Items · Pediatric Palliative Care Library

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

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 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.…

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…

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,…

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…

"The one thing you can never take away"

This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…

Tags: 2001, Adult, Alexander KV, Backlog, Female, Fetal Death, Grief, Humans, Infant, Journal Article, Male, Maternal-Child Nursing, Newborn, Photography, Pregnancy, Social Support, The American Journal Of Maternal Child Nursing

Exploring perinatal death with midwifery students' using a collaborative art project

OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…

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…

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

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…

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

Advance Care Planning: Outpatient Antenatal Palliative Care Consultation

Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care…

Tags: 2017, Adult, Advance Care Planning/organization & Administration, Archives of Disease in Childhood. Fetal and Neonatal Edition, Carter BS, Female, Humans, Infant Newborn, March 2017 List, Outpatients, Palliative Care/organization & Administration, Pregnancy, Prenatal Care/organization & Administration, Referral And Consultation

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…

Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis

The diagnosis of fetal alcohol spectrum disorder (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated…

Tags: 2005, Abnormalities, Adult, Alcohol Drinking/prevention & control, Alcoholism/diagnosis/prevention & control, Backlog, Canada/epidemiology, Canadian Medical Association Journal, Child, Chudley AE, Conry J, Cook JL, Diagnosis, Differential, Ethanol, Female, Fetal Alcohol Syndrome/diagnosis/epidemiology/prevention & control, Humans, Infant, Journal Article, LeBlanc N, Loock C, Mass Screening/standards, Medical History Taking/standards, Multiple/diagnosis, Nervous System Diseases/diagnosis, Newborn, Non-U.S. Gov't, Physical Examination/standards, Pregnancy, Pregnancy Complications/diagnosis/prevention & control, Prenatal Exposure Delayed Effects, Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder, Referral and Consultation/standards, Research Support, Risk Factors, Rosales T

Perinatal mortality: assisting parental affirmation

The health professional's role does not cease with perinatal death, but shifts towards the prevention of postmortem psychiatric sequelae in the parents. A multidisciplinary bereavement service has found that an increased awareness of the final…

Tags: 1978, Adaptation, Backlog, Burial, Cohen L, Female, Fetal Death/psychology, Humans, Infant, Journal Article, Middleton J, Newborn, O'Donnohue N, Pregnancy, Psychological, The American Journal Of Orthopsychiatry, Zilkha S

Silhouette of pain

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…

“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.

SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…

The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study

Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical,…

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…

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…

The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease

AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part…

The sense of coherence in early pregnancy and crisis support and posttraumatic stress after pregnancy loss: a prospective study

A. Antonovsky (1987) defined the sense of coherence (SOC) as the ability to perceive a stressor as comprehensible, manageable, and meaningful. In this prospective study of pregnant women, the authors tested the relationships between the SOC in early…

Addressing the continuum of maternal and newborn care in Ghana: implications for policy and practice

Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality…

Updated Perinatal Palliative Standards Emphasise Choice And Bereavement Support

Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.

Tags: 2017, Bereavement, Evans N, Female, Humans, Infant Newborn, Neonatal Nursing, Nursing Children and Young People, Palliative Care/ma [manpower], Palliative Care/st [standards], Perinatal Death, Practice Guidelines As Topic, Pregnancy, September 2017 List, United Kingdom

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…

Dying At Lifes Beginning: Experiences Of Parents And Health Professionals In Switzerland When An ’in Utero' Diagnosis Incompatible With Life Is Made.

OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…

Health care access and utilization among pregnant adolescents

PURPOSE: To assess access to and use of health care by adolescents prior to their becoming pregnant. METHODS: An interviewer-administered questionnaire was completed by all pregnant adolescents (n = 65) entering the Rochester Adolescent Maternity…

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,…

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

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

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…

End-of-life decisions in perinatal care: A view from health-care providers in Mexico

OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers,…

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…

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

Natural history of nonketotic hyperglycinemia in 65 patients

BACKGROUND: Glycine encephalopathy, also known as nonketotic hyperglycinemia (NKH), is an autosomal recessive disorder caused by a defect in the glycine cleavage system. NKH is classically associated with neonatal apnea, lethargy, hypotonia, and…

Tags: 2004, Adolescent, Age of Onset, AIM, Anticonvulsants/tu [Therapeutic Use], Apnea/et [Etiology], Apnea/th [Therapy], Applegarth D, Artificial, Backlog, Child, Corpus Callosum/ab [Abnormalities], Disease Progression, Female, Glycine/bl [Blood], Glycine/cf [Cerebrospinal Fluid], Hamosh A, Health Surveys, Hoover-Fong JE, Humans, Hydrocephalus/ep [Epidemiology], Hydrocephalus/et [Etiology], Hyperglycinemia, IM, Infant, Journal Article, Juvenile/dt [Drug Therapy], Juvenile/ep [Epidemiology], Juvenile/et [Etiology], Male, Myoclonic Epilepsy, Neurology, Newborn, Nonketotic/co [Complications], Nonketotic/ep [Epidemiology], Nonketotic/me [Metabolism], Nonketotic/mo [Mortality], Nystagmus, Pathologic/ep [Epidemiology], Pathologic/et [Etiology], Pregnancy, Pregnancy Complications/ep [Epidemiology], Preschool, Psychomotor Disorders/ep [Epidemiology], Psychomotor Disorders/et [Etiology], Questionnaires, Registries, Respiration, Retrospective Studies, Seizures/dt [Drug Therapy], Seizures/ep [Epidemiology], Seizures/et [Etiology], Sex Factors, Shah S, Survival Analysis, Toone J, Van Hove JL

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

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

Elective Ventilation To Facilitate Organ Donation In Infants With Anencephaly: Perinatal Professionals’ Views And An Ethical Analysis.

AIM:
Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice.

METHODS:
Anonymous online survey: demographics, ethical viewpoints and potential…

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