March 2021 List
Title
March 2021 List
Collection Items
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…
Informing mothers of neonatal death and the need for family-centered bereavement care: A phenomenological qualitative study
PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were…
Characteristics and outcomes of coronavirus disease 2019 (COVID-19) in critically ill pediatric patients admitted to the intensive care unit: A multicenter retrospective cohort study
BACKGROUND: Characteristics of critical Severe Acute Respiratory Syndrome-related Coronavirus 2 (SARS-CoV-2) infection in children is not well understood. This study described the clinical characteristics of children admitted to intensive care units…
Independent hospices for children and young people; Hospices North East
In 2012 more than 2000 children and young people (CYP) aged 1–19 died in England and Wales. For CYP, cancer, nervous system, respiratory, cardiovascular and congenital conditions account for about 60% of deaths. The nine independent hospices across…
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management,…
Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of…
Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals' assessment and…
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral…
Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and…
Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently…
Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10…
Educational Perspectives: Palliative Care Education in Neonatal-Perinatal Medicine Fellowship
The neonatal period from birth to less than or equal to 28 days is one of increased risk of death. Congenital anomalies and prematurity are 2 of the most common risk factors for death at this early age. Many of these neonates will die in an intensive…
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…
Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK…
Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews…
Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60…
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
BACKGROUND: Better tools are needed to diagnose and identify children at risk of clinical malnutrition. OBJECTIVES: We aimed to compare body composition (BC) and malnutrition screening tools (MSTs) for detecting malnutrition on admission; and examine…
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We…
Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis…
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private…
Development of a managed clinical network for children's palliative care - a qualitative evaluation
BACKGROUND: Consistent evidence suggests that children's palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the…
Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive Care
OBJECTIVES: In children, coronavirus disease 2019 is usually mild but can develop severe hypoxemic failure or a severe multisystem inflammatory syndrome, the latter considered to be a postinfectious syndrome, with cardiac involvement alone or…
Implementation of a Multi-Modal Palliative Care Curriculum for Pediatric Residents
OBJECTIVES: To evaluate the feasibility and efficacy of a new multi-modal pediatric palliative care curriculum. We sought to determine the effect on comfort in palliative care, knowledge, and change in behavior by utilizing these skills with…
Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients
OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to…
I grieve because I loved her: Bereaved parents' perceptions of a mindfulness-based retreat
Mindfulness-based interventions have recently been applied to grief-related distress. However, little is known about how bereaved participants experience them. This study explored bereaved parents' experiences of a mindfulness-based grief retreat…
Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with…
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences…
Most Children With Medical Complexity Do Not Receive Care in Well-Functioning Health Care Systems
OBJECTIVES: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. PATIENTS AND METHODS:…