Browse Items · Pediatric Palliative Care Library

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

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…

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…

Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…

Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss

Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate…

Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases…

Tags: 2024, Ahn SY, Child Parent Relation, Hospice Care, Human, Infant, Infant Newborn, Intensive Care Units, Journal of Hospice and Palliative Nursing, Kim ES, Kim S, Lee H, March List 2024, Neonatal Intensive Care Unit, Newborn, Nursing Care, Palliative Care, Palliative Therapy, Psychology

Newborn Care Curriculum: Palliative Care for the Newborn

Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in…

Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study

Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived…

Tags: 2023, Advances in Neonatal Care, East Asian, Emotion, February List 2024, Guo-Qin Y, Human, Infant, Li-Ping W, Lin W, Neonatal Intensive Care Unit, Neonatal Nurse, Newborn, Psychology, Qi L, Terminal Care, Tong-Hui S, Xiao-Li R

Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit

Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all…

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are…

A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study

Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often…

Tags: 2023, Article, Brannon M, breast feeding, breast pump, Brito S, Cerebral Palsy, Chahin N, Children, clinical assessment, Cognitive Defect, Cohort Analysis, Comparative Study, Congenital Heart Disease, Controlled Study, do not resuscitate order, Donor Milk, extracorporeal oxygenation, Family Centered Care, February List 2024, Female, Fox J, gastrointestinal disease, Genetic Disorder, Gestational Age, health disparity, Hendricks-Munoz KD, Hospital Admission, hospital discharge, Human, hypoxic ischemic encephalopathy, incurable disease, Infant, kidney disease, lactation, learning disorder, Length Of Stay, Life limiting condition, Lung Disease, Major Clinical Study, Male, McCarthy K, Mohammed T, Mortality, Neonatal Intensive Care Unit, Neurologic Disease, Nubayaat L, Nunlist S, nutritional deficiency, Retrospective Study, Seizure, sensory dysfunction, Williams A, Xu J

A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions

Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…

Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit

Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the…

The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care

Siblings and End-Of-Life Decision Making in the NICU

Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the…

Ethics at the end of life in the newborn intensive care unit: Conversations and decisions

The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue…

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit

OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of…

Paediatric palliative care in the NICU: A new era of integration

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…

Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China

Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5…

Tags: 2022, 2022 Special Edition Low Resource Setting Issue, American Journal of Hospice and Palliative Medicine, Chang YC, Child, Cross-sectional Study, Gu L, Health Personnel Attitude, Human, Li ZZ, Neonatal Intensive Care Unit, Newborn, palliative nursing, Palliative Therapy, Peng NH, Terminal Care, Wei BR, Zhou JF

Neonatal Palliative Care Practices: An Indian Perspective

Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe…

Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review

OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify…

Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage

Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the…

Nurses' involvement in end-of-life decisions in neonatal intensive care units

BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To…

Tags: 2022, April 2022 List, Boutsikou T, Chatziioannidis I, Cuttini M, Decision Making, end-of-life, Giougi E, Iacovidou N, Iliodromiti Z, Neonatal Intensive Care Unit, Nurses, Nursing Ethics, Pouliakis A, Sokou R, Volaki V, Xanthos T

End-of-Life Decision-Making in Pediatric and Neonatal Intensive Care Units in Croatia-A Focus Group Study among Nurses and Physicians

Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare…

Communication of bad news in the context of neonatal palliative care: experience of intensivist nurses

OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17…

Tags: 2022, Andreato AMO, Camilo BHN, Communication, March 2022 List, Misko MD, Neonatal Intensive Care Unit, Newborns, nurse perspectives, Revista Gaúcha De Enfermagem, Roveri JR, Salim NR, Serafim TC

Future roles of artificial intelligence in early pain management of newborns

The advent of increasingly sophisticated medical technology, surgical interventions, and supportive healthcare measures is raising survival probabilities for babies born premature and/or with life-threatening health conditions. In the United States,…

Measuring communication quality in the Neonatal Intensive Care Unit

BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative…

Tags: 2021, Communication, communication quality, Guttmann KF, June 2021 List, Kelley AS, Neonatal Intensive Care Unit, Neonatology, Nicu, Orfali K, Pediatric Palliative Care, Pediatric Research

My child's legacy: A mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives

Objective Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the…

Tags: 2020, Bereavement, Bmj Open, Bourque C J, Dahan S, Janvier A, legacy-making, Mantha G, mixed-methods study, Neonatal Intensive Care Unit, Nicu, November 2020 List, Parental Perspectives, provider perspectives, Reichherzer M

Neonatal palliative care: perception differences between providers

Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive…

Tags: 2020, Communication, Hatton A, Healthcare Providers, Hill A B, Journal Of Perinatology, Neonatal Intensive Care Unit, Neonatal Palliative Care, Nicu, Niehaus J Z, Palliative Care, Palmer M M, Pediatrics, perception differences, Scanlon C, September 2020 List, Slaven J

Perceptions of neonatal palliative care: Similarities and differences between medical and nursing staff in a level IV neonatal intensive care unit

Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal…

Tags: 2020, attitudes toward palliative care, barriers to palliative care, Bruno C J, facilitators of palliative care, Journal of Palliative Medicine, July 2020 List, Kyc S J, Montgomery A M, Neonatal Intensive Care Unit, Neonatal Palliative Care, Nicu, perceptions, Shabanova V

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

Preparing Nurses for Palliative Care in the NICU

Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of…

Tags: 2020, Advances in Neonatal Care, End-of-Life Nursing Education Consortium (ELNEC), Ferrell B, Fortney C A, June 2020 List, Murphy H, Neonatal Intensive Care Unit, Nurses, Nursing, Palliative Care, Pediatric Palliative Care, Thaxton C A

Palliative care in an underserved community: Striving and thriving

Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern…

Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)

Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs,…

Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)

Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS)…

Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care

Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.

Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units

Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the…

Palliative and end-of-life care for infants and their families in the NICU: Building a program of research

This article is a brief report on the building of a program of research to support palliative and end-of-life care for infants and their families in the neonatal intensive care unit.

Tags: 2019, Article, Fortney C A, Human, Infant, January 2020 List, Journal of pediatric nursing., Neonatal Intensive Care Unit, Terminal Care

Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses

Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.…

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