OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with…
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles…
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Method(s): Six databases and…
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…
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…
BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to…
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…
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…
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three…
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to…
BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child…
OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children…
INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic,…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three…
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…
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and…
Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and…
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…
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…
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a…
End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or…
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and…
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of…
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's…
BACKGROUND: Extracorporeal membrane oxygenation (ECMO) has been increasingly used for severe neonatal respiratory failure refractory to conventional treatments. To systematically evaluate the complications and mortality of venovenous ECMO (VV ECMO)…
OBJECTIVES: The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered…
OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to…
BACKGROUND: The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22)…
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI…
Context: There is an ongoing established need to develop engaging pain assessment strategies to provide more effective individualized care to pediatric patients with serious illnesses. This study explores the acceptability of wireless devices as one…
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy…
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy…
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our…
PURPOSE: Currently, several scoring systems for predicting mortality in severely ill children who require treatment in a pediatric intensive care unit (PICU) have been established. However, despite providing high-quality care, children might develop…
Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a…
Objective: To explore the pediatricians' attitudes and perceptions toward do-not-resuscitate (DNR) orders in a specific region of the world not fully explored before. Methods: A cross-sectional study was conducted between March 4 and May 30, 2018.…
Oral mucositis can be caused by chemotherapy and can affect a patient's quality of life. Nowadays, to prevent chemotherapy-induced oral mucositis (CIOM) is a crucial point in palliative care centers. This trial aimed to assess the effectiveness of…
