Browse Items · Pediatric Palliative Care Library

X-linked adrenoleukodystrophy: clinical, metabolic, genetic and pathophysiological aspects

X-linked adrenoleukodystrophy (X-ALD) is the most frequent peroxisomal disease. The two main clinical phenotypes of X-ALD are adrenomyeloneuropathy (AMN) and inflammatory cerebral ALD that manifests either in children or more rarely in adults. About…

Tags: 2012, Adrenoleukodystrophy, Animals, ATP-Binding Cassette Transporters, Aubourg P, Backlog, Berger J, Biochimica Et Biophysica Acta, Brain, Fatty Acids, Female, Humans, Journal Article, Kemp S, Mutation, Phenotype, Pregnancy, Prenatal Diagnosis

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…

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…

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

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…

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…

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…

The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care

BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study…

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,…

The nature of opioid responsiveness and its implications for neuropathic pain: new hypotheses derived from studies of opioid infusions

In recent years, the observation that the response of patients to opioid drugs may be influenced by properties inherent in the pain or pain syndrome, such as its pathophysiology, has evolved into the belief that certain types of pain, e.g.,…

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…

The experiences and needs of healthcare professionals facing perinatal death: A scoping review

BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses…

Tags: 2017, Andre B, Experiences, February 2018 List, Female, Health Personnel/ psychology, Health Services Needs And Demand, Healthcare Professionals, Humans, International Journal Of Nursing Studies, Lopez V, Maternal Health Services/ manpower, Maternity care, Needs, Perinatal Death, Pregnancy, Scoping review, Shorey S, Stillbirth

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…

Surgical Intervention In Trisomy 18-supporting Pallative Care

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

Silhouette of pain

Seeking the best training model for difficult conversations in neonatology

OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a…

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…

Review of pediatric autopsies performed at a university hospital in Ribeirao Preto, Brazil

CONTEXT: Autopsy continues to provide important data for quality assurance, teaching, scientific purposes, and health planning, especially if performed according to a comprehensive protocol. OBJECTIVE: To describe and analyze data from all perinatal…

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

Reframing US Maternity Care: Lessons Learned From End-of-Life Care

Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe

BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol…

Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition

Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction…

Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.

BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…

Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health

CONTEXT: The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. OBJECTIVE: To identify risk and protective factors at the family, school, and individual levels…

Proopiomelanocortin, a polypeptide precursor with multiple functions: from physiology to pathological conditions

Proopiomelanocortin (POMC) is the polypeptide precursor of ACTH. First discovered in anterior pituitary corticotroph cells, it has more recently been revealed to have many other physiological aspects. The fine molecular mechanisms of ACTH…

Tags: 2003, Animals, Backlog, Bertagna X, Biomarkers of Pain, de Keyzer Y, European Journal Of Endocrinology, Female, Humans, Journal Article, Nervous System Diseases/physiopathology, Neuropeptides/metabolism, Pregnancy, Pro-Opiomelanocortin/biosynthesis/genetics/physiology, Raffin-Sanson ML

Physiological stress and brain vulnerability: understanding the neurobiology of connectivity in preterm infants

Tags: 2011, Annals Of Neurology, Backlog, Brain, Developmental Disabilities, Female, Humans, Infant, Infant Behavior, Intensive Care Units, Journal Article, Magnetic Resonance Imaging, Male, Msall ME, Neonatal, Pregnancy, Premature

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,…

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.…

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

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

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…

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

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…

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,…

Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study

CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine…

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…

Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.

Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment,…

Neonatal end-of-life spiritual support care

The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss…

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