Browse Items · Pediatric Palliative Care Library

Bereaved Parents' Perceptions of Infant Suffering in the NICU

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…

Tags: 2020, Baughcum AE, Fortney CA, Gerhardt CA, Infant, Intensive Care, Journal of Pain and Symptom Management, Keim MC, Moscato EL, Mothers, Neonatal, Neonatal Intensive Care Units, Newborn Infant, Nicu, Parents, Perception, Special Edition #1 2022 List, Suffering, Winning AM

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

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

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…

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

Ethical issues in treatment of babies born at 22 weeks of gestation

Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering…

Tags: 2020, Archives of Disease in Childhood, Ethics, gestational viability, July 2021 List, Lantos JD, Life Sustaining Treatment, Neonatal, premature birth

Implementing music therapy in a Norwegian neonatal intensive care unit

BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and…

Goals of Care Discussions and Moral Distress among Neonatal Intensive Care Unit Staff

CONTEXT: The relationship between quality of Goals of Care (GOC) conversations and moral distress among NICU providers is not known. OBJECTIVES: We sought: 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress…

Tags: 2021, Communication, DeMauro SB, End Of Life, Ethics, Flibotte J, Guttmann K, Huber M, Journal of Pain and Symptom Management, March 2021 List, Moral Distress, Neonatal, Seitz H

End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms

One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL…

Tags: 2020, December 2020 List, Durrani S, Dye A, End-of-life Care, Frontiers in Pediatrics, Haug S, Neonatal, neonatal hospice, neonatal pain, Neonatal Palliative Care

Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course

Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but…

Tags: 2020, Competence, December 2020 List, Frontiers in Pediatrics, Hammond J, Neonatal, Palliative Care, Parravicini E, Perinatal, training course, Wool C

Caring for Dying Infants: A Systematic Review of Healthcare Providers' Perspectives of Neonatal Palliative Care

OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill…

Tags: 2020, American Journal Of Hospice And Palliative Care, Attitudes, Beltran SJ, December 2020 List, end-of life care, Hamel MN, Neonatal, Palliative

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn…

Tags: 2020, Children's Hospice, Family-centred Care, Journal of Neonatal Nursing, Mendizabal-Espinosa R M, Neonatal, November 2020 List, Palliative Care, Price J E, Referral

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

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

Implementation of a Perinatal Hospice Program

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The…

Tags: 2020, Advances in Neonatal Care, antenatal hospice, Falke M, July 2020 List, Life-limiting, Neonatal, Neonatal Intensive Care Unit, Nicu, Perinatal Hospice, Perinatal Palliative Care, Rubarth L B

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…

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

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

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

A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice

More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative…

Tags: 2019, December 2019 List, Education, End-of-life Care, Evaluation, Journal of Perinatal and Neonatal Nursing, Kirton J, Knighting K, Neonatal, Palliative Care, Shaw BNJ, Silverio SA

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

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

Always a burden? Healthcare providers' perspectives on moral distress

BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…

Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death

Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with…

A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care

AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness…

Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

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…

Clinical and laboratory factors that predict death in very low birth weight infants presenting with late-onset sepsis

BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…

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…

Differences in characteristics of dying children who receive and do not receive palliative care

OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This…

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

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…

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…

Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…

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…

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

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

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