Browse Items · Pediatric Palliative Care Library

Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units

Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units

The purpose of this study was to assess the use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units. The directors of 38 pediatric units and 31 neonatal units reported that analgesics were infrequently…

Thinking outside the box: prenatal care and the call for a prenatal advance directive

The Role of Perinatal Palliative Care in Fetal Neurology

Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or…

Tags: 2021, American Journal of Perinatology, Bidegain M, December 2021 List, Ellestad S, fetal, fetal neurology, Lemmon ME, Neonatal, Neurology, Palliative Care, Perinatal Palliative Care, Rent SM

The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses

BACKGROUND: This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses. METHOD(S): The research started…

Tags: 2022, alpha, Analysis, Article, Attitude, Barbosa J, CARE, Clinical, coefficient, confirmatory, consistency, controlled, convergent, Cronbach, degree, discriminant, Education, end-of-life, error, experiment, Face, factor, Female, Figueira AR, Fradique E, Freedom, Human, intensive, internal, Major, Male, mean, Neonatal, Newborn, Nurse, Nursing, October 2022 List, Of, Palliative, Palliative & Supportive Care, quantitative, Rebotim AM, Reliability, Roldao MG, root, Santos Curado MA, Scale, Software, Sousa F P, squared, study, supportive, terminal, Therapy, Unit, VALIDATION, Validity

The ethics of withholding/withdrawing nutrition in the newborn

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures…

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Research with newborn participants: doing the right research and doing it right

2005

Tags: 2005, and debate about how to conduct research in an ethical manner, Backlog, Child Advocacy/ethics/legislation & jurisprudence CommunicationEthics, Education, Ethics, ethics Research Design, for example in relation to protecting the rights of vulnerable research participants. Research in the neonatal intensive care unit (NICU), for example in relation to social values and individual needs, Franck LS, Journal Article, Journal of Perinatal & Neonatal Nursing, legislation & jurisprudence, legislation & jurisprudence Parents, legislation & jurisprudence Research Support, Neonatal, Newborn Informed Consent/ethics Intensive Care, Non-U.S. Gov't Therapeutic Human Experimentation/ethics/legislation & jurisprudence United States%X Research ethics encompass debate about what research topics matter, NursingEthics, organization & administration, organization & administration Parental Consent, organization & administrationNurse's Role, parti cularly at the policy level where funding and procedural issues are decided. New approaches are also needed and could involve more direct collaboration between nurses and parents., PedPal Lit, psychology Neonatal Nursing, psychology Nursing Research, psychology Professional-Family Relations, Research Humans Infant, standards Research Subjects, where critically ill infants receive expensive and often invasive treatment

Recruiting bereaved parents for research after infant death in the neonatal intensive care unit

Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their…

Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital

Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST…

Tags: 2022, Analysis, Article, CARE, Carpenter AT, Casas JA, Child, Clinical, Coleman RD, coronary, Crawford CA, data, Drug, erratum, experiment, Female, guideline, Health, Hospital, Human, intensive, Journal of Pain and Symptom Management., Life, Major, Male, Neonatal, Palliative, Pediatric, Perception, Practice, Qualitative, Quality, quantitative, Sawyer K E, September 2022 List, Software, study, sustaining, Therapy, Treatment, Tume SC, Unit, Withdrawal

Provider concordance regarding elements of goals-of-care discussions in neonatal intensive care

Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goals-of-care…

Tags: 2021, Acta Paediatrica, End Of Life, February 2022 List, Guttmann K, Kelley A, Liu B, Neonatal, Palliative Care, provider perspectives

Primary Palliative Care In Neonatal Intensive Care

Tags: 2017, April 2017 List, Consultative, English N, Marc-Aurele K, Neonatal, Nicu, Perinatal, Primary Palliative Care, Seminars in Perinatology

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

Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan

The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23…

Tags: 2019, Abdel Razeq N M, Developing World 2019 List, End Of Life, Infant, Journal Of Child Health Care, Neonatal

Perinatal Palliative Care Birth Planning as Advance Care Planning

Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a…

Tags: 2020, Advance Care Planning, birth plan, Cortezzo D E, Ellis K, Frontiers in Pediatrics, life-limiting diagnosis, Neonatal, November 2020 List, Perinatal Palliative Care, Schlegel A

Perception of health professionals about neonatal palliative care

Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern…

Tags: 2019, Attitude Of Health Personnel, Batoca Silva E M, Content Analysis, Human, Infant, Intensive Care Units, January 2020 List, Machado Silva M J, Marques Silva D, Neonatal, Newborn, Palliative Care -- In Infancy and Childhood, Phenomenological Research, Portugal, Professional-patient Relations, Qualitative Studies, Quality Of Life, Revista Brasileira de Enfermagem

Pediatric extubation: "pulling the tube"

Parental Involvement In Neonatal Critical Care Decision-making.

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care…

Parent and health care provider communication and decision making in the intensive care nursery

This study investigated parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery. Both parents and health care providers stressed the importance of…

Palliative Care In The Neonatal Unit: Neonatal Nursing Staff Perceptions Of Facilitators And Barriers In A Regional Tertiary Nursery

Background Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers…

Tags: 2017, Barriers, BMC Palliative Care, Facilitators, Ireland S, July 2017 List, Kilcullen M, Neonatal, Palliative Care, Qualitative, Regional Location

Palliative care in the neonatal intensive care unit: An Indian experience

The survival of newborn babies born with various problems has improved with the access to life sustaining technologies. Despite this, death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies suffering from life limiting…

Tags: 2016, Damani A, Ghoshal A, Infant, Intensive Care Units, Journal of Neonatal Nursing, Muckaden MaryAnn, Neonatal, Newborn, Palliative Care -- Psychosocial Factors -- India

Palliative care in the neonatal intensive care unit

With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the…

Tags: 2020, Health Services Accessibility, Home Health Care, Hospice Care, Intensive Care Units, Jackson C, June 2020 List, Multidisciplinary Care Team, Neonatal, Paediatrics & Child Health, Palliative Care, Pediatricians, Perinatal Care, Perinatal Death – Psychosocial Factors, Prenatal Diagnosis, psychosocial, Support, United Kingdom, Vasudevan C

Palliative care in a tertiary neonatal intensive care unit: a 10-year review

OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision…

Tags: 2018, Berry MJ, BMJ Supportive & Palliative, end-of-life, integrative, January 2019 List, Keenan N, Neonatal, Neonatology, Ng SKF, palliation, Palliative, Swart S

Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review

BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main…

Tags: 2021, Botigue T, Escobar-Bravo MA, Family, Gonzalez Alonso AV, Intensive Care Units, International nursing review, Interventions, Lavedan Santamaria A, March 2022 List, Masot O, Neonatal, Nursing, Paraiso Pueyo E, Parents, Perinatal grief

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…

Neonatal palliative care: a practical checklist approach

OBJECTIVES: Following publication of detailed national neonatal palliative care guidance, practical regional guidance, in the form of multidisciplinary 'checklists', was implemented aiming to improve the quality of neonatal palliative care. METHODS:…

Tags: 2018, BMJ Supportive & Palliative Care, Liang YF, Neonatal, November 2018 List, Paediatrics, Palliative Care, Taylor N, Tinnion R

Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States

Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…

Neonatal End-of-Life Symptom Management

Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or…

Tags: 2020, Cortezzo D E, end-of-life, Frontiers in Pediatrics, Meyer M, Neonatal, November 2020 List, Perinatal Palliative Care, pharmacological management, Symptom Management

Neonatal donation: are newborns too young to be recognized?

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…

Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review

Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment,…

Tags: 2023, Dnr, end-of life, Frontiers in Pediatrics, Infant, Newborn, Islam, Muslim, Neonatal, Palliative, Palliative Care, Perinatal, September List 2054, Shoaib AB, Soliman AF, Vawter-Lee M, Venkatesan C, Withdrawal

Moving Toward A Shared Process: The Impact Of Parent Experiences On Perinatal Palliative Care

Tags: 2017, April 2017 List, Decision Making, Fry JT, Hasegawa SL, Neonatal, Palliative Care, Parent Experiences, Perinatal, Seminars in Perinatology, Trisomy 13, Trisomy 18

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily…

Tags: 2020, Cortezzo DE, Decision-making, End-of-life Care, ethical confrontation, February List 2023, Frontiers in Pediatrics, Intensive Care, Medical Futility, Mills M, Moral Distress, Neonatal, neonatal intensive care, periviability

Loss in the NICU Sibling Matters

Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a…

Tags: 2013, American Journal of Hospice & Palliative Medicine, Backlog, Bereavement, Carter BS, Family, Intensive Care, Journal Article, Loss, Neonatal, Robinson E, Sandler CL, sibling bereavement, Siblings

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