Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories.…
Background:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%?85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However,…
Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. BACKGROUND: Pediatric palliative care requires research to mature the science and…
Background: The impact of looking after children who live with complex chronic conditions is a growing public health issue. However, it is unclear whether sociodemographic and psychosocial variables can be used to predict the burden on the caregiver…
Objective: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years. Study design: Internet-based survey (2016) involving 170 tertiary neonatal intensive care…
BACKGROUND AND PURPOSE: Sibling loss can heighten children's fears. Approximately two million children in the United States experience the death of a sibling each year, leaving 25% of them in need of clinical intervention and more than 50% with…
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches…
OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study…
This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and…
Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based…
BACKGROUND: Spiritual care competencies are among the primary professional skills that enable best practices in nursing. Assessing these competencies and identifying those that are insufficient are important tasks. The traditional Chinese version of…
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has…
BACKGROUND: Despite the significant impact of chronic symptoms on quality of life with cystic fibrosis (CF), the role of palliative care in management of this disease is not well defined. The coping, goal assessment, and relief from evolving CF…
Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the…
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…
AIM: To describe coping strategies in children and adolescents with cerebral palsy (CP), relative to age. METHOD: Patients were prospectively recruited from two paediatric rehabilitation centres in France. The Pediatric Pain Coping Inventory - French…
BACKGROUND: Home care service (HCS) for sick children is a complex healthcare service, which can be organised in various models. Despite the possibility to support family everyday life, the accessibility and utilisation may still be limited. The aim…
BACKGROUND AND PURPOSE: An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care…
The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a…
The death of a child is an individual process of grief but also a context of significant relational processes, which have been only rarely considered in research. The aim of this study was to examine the interactive processes within bereaved parents.…
