Browse Items · Pediatric Palliative Care Library

Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.

Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome…

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,…

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…

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

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…

Silhouette of pain

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…

A grief ignored: Narratives of pregnancy loss from a male perspective

This paper, utilising a narrative approach, aims to describe the experiences of men whose partner had experienced pregnancy loss, based on data from Northern Ireland. The methodology was based upon observation within pregnancy loss self-help groups…

Tags: 2004, Anger, Attitude, Backlog, Bereavement, Emotion, Fathers, Grief, Interviews, Journal Article, Male, male grief, McCreight BS, Meaning, Narrative, Nurses, Paper, Pregnancy, Pregnancy Loss, Research, Role, Self-Help Groups, Sociology of Health & Illness, Support

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

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

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.,…

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

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…

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…

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…

"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

Does episiotomy prevent perineal trauma and pelvic floor relaxation?

OBJECTIVE: To compare the outcomes of the current practice of liberally or routinely employing episiotomy to prevent perineal tears and pelvic floor relaxation (control group) to a policy of restricting episiotomy use to specific fetal and maternal…

Health-related, help-seeking behaviors in female Mexican-American adolescents

PURPOSE: To explore and describe the health-related, help-seeking behaviors of young female Mexican-American adolescents. DESIGN: Qualitative exploratory-descriptive design using focus groups. SETTING: Community recreation centers. PARTICIPANTS: 18…

Tags: 1997, Adolescent, Adolescent Health Services, Backlog, Child, Female, Focus Groups, Health Behavior, Health Promotion, Health Services Needs And Demand, Hispanic Americans, Humans, Journal Article, Journal Of The Society Of Pediatric Nurses, Mexico/ethnology, Pregnancy, Rew L, Sex Education, United States

Natural history of trisomy 13

The poor prognosis of patients with trisomy 13 has long been accepted and has been ascribed to brain and heart malformations. It has been suggested, however, that the long term survival is better than was previously thought and that cardiac surgery…

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

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…

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

Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey

OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal…

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

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,…

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…

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…

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

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…

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…

Developing A Perinatal Memory-making Program At A Children's Hospital

events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations…

Tags: 2014, American journal of maternal/child nursing, Child Health, Female, Fornehed ML, Hospice Care/methods, Hospice Care/psychology, Hospitals, Humans, Infant Newborn, Lindley LC, March 2016 List, Memory, Miller LH, Mixer SJ, Niederhauser VP., Perinatal Death, Postnatal Care/psychology, Pregnancy

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 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…

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

Antenatal Palliative Care Consultation: Implications For Decision-making And Perinatal Outcomes In A Single-centre Experience

BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in…

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…

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

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…

Lethal Fetal Abnormalities: How To Approach Perinatal Palliative Care?

OBJECTIVE:
Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such…

Tags: 2016, Anomalies, Einaudi MA, Ethical Issue, Fetal Abnormality, Gire C, Haddad G, Information, Journal of Maternal, Fetal and Neonatal Medicine, Malformations, May 2016 List, Obstetrics & Gynecology, Palliative Care, Perinatal Medicine, Pregnancy, Prenatal-diagnosis, Professionals, Tosello B

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