BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine…
The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to…
Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses…
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…
It is becoming increasingly evident that nutrition is not only an important component of health but also that levels of specific nutrients can affect disease expression. This is particularly apparent in the realm of HIV disease. Despite this…
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a…
Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents…
There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threateningconditions and their families. The confluence of several recent developments has created a critical window of opportunity…
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample…
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…
A child's death can have a profound and lasting effect on surviving siblings. Early researchers and clinicians have suggested that siblings were at risk for serious psychopathology. However, in later studies, researchers found that although the grief…
PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed…
Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents…
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid…
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…
Highlights
•Parent experiences surrounding end-of-life care in the NICU were explored.
•The opportunity to be a parent was important regardless of the infant's prognosis.
•NICU nurses played a critical role in facilitating parenting.
•Living with…
Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings…
PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected…
An in-depth exploratory study identified major stressors experienced by children diagnosed with cancer. Four themes were used to analyze data from a series of focus group discussions and individual interviews with children, parents, hospital…
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…
STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care…
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…
Background Family-centered care is an important concept underpinning care of children. Although much researched in some settings, little research has explored specialist settings, or areas where both children and adults are cared for, such as the…
Many pediatric health care institutions lack guidelines to address the presence of family members during resuscitation activities. This integrative literature review was used to establish an evidence-based approach that would compliment our…
PURPOSE: The purpose of this study was to gain knowledge of the educational preparation and attitudes of registered nurses at a southeastern pediatric hospital toward caring for dying children and their families. DESIGN AND METHODS: A descriptive…
INTRODUCTION: The loss of a child in a family is a painful experience. Despite this, most studies focus on the grieving experience of parents. Our understanding of sibling bereavement therefore remains underexplored. This study aims to address this…
This article presents an original study commissioned by the UK charity, Together for Short Lives which explored children and young people up to 25years of age with life-threatening/limiting conditions and their families. Using Appreciative Inquiry…
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their…
Crisis theory, stress and coping theory, and research on parental stress and coping during pediatric critical care experiences are integrated into a conceptual framework for understanding, assessing, and ultimately intervening to reduce parental…
Existing research identifies numerous variables that may influence children's distress responses during medical procedures. In preparation for a large multisite study to test relationships among these numerous variables and parent distraction…
Care of children at the end of life frequently involves ethical dilemmas and difficult decisions. These ethical dilemmas often complicate the already challenging circumstances surrounding the death of a child; therefore, the knowledge and application…
