November 2020 List
Title
November 2020 List
Collection Items
Charting the Territory: End-of-Life Trajectories for Children with Complex Neurological, Metabolic and Chromosomal Conditions
OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited…
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…
Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross-Sectional Survey
PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing…
Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context
Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current…
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…
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…
Experience of hope: An exploratory research with bereaved mothers following perinatal death
Problem The negative implications of perinatal death on mothers’ mental health are documented, however little is known about their experience of hope. Background Within the broader literature, hope has contributed to better mental health and…
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland…
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…
Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program
OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention…
Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition
Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for…
Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children
There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of…
Hospital Practices for Parents Following Perinatal Loss
The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire…
Perspectives of Pediatric Providers on Patients With Complex Chronic Conditions: A Mixed-Methods Sequential Explanatory Study
BACKGROUND: Children with complex chronic conditions present unique challenges to the pediatric intensive care unit, including prolonged length of stay, complex medical regimens, and complicated family dynamics. OBJECTIVES: To examine perspectives of…
Noninvasive Ventilation in Palliative Care and Ethical Dilemma
Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper…
Variation In State Medicaid Implementation Of The ACA: The Case Of Concurrent Care For Children
More than 55,000 children die each year in the United States, and hospice is used for very few of them at the end of their lives. Nearly one-third of pediatric deaths are a result of chronic, complex conditions, and the majority of these children are…
Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current…
End-of-life decisions in neonatal care: a conversation analytical study
OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and…
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…
Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement
OBJECTIVES: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and…
Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: a qualitative analysis of U.S. Survey Data
CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on…
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South…
Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children
BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…
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…