May 2019 List
Title
May 2019 List
Collection Items
Interactive Processes in Grief and Couples' Adjustment After the Death of a Child
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.…
Sibling Relationships Over the Life Course: Growing Up With a Disability
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…
Parents: Wish I had done, wish I had not done, and coping after child NICU/PICU death
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…
Accessibility, utilisation and acceptability of a county-based home care service for sick children in Sweden
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…
Pain coping strategies in children with cerebral palsy
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…
Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family
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…
Hospital admissions into paediatric palliative care: A retrospective study
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…
Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis
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…
Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
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…
Psychometric properties of the Chinese mainland version of the Palliative Care Spiritual Care Competency Scale (PCSCCS-M) in nursing: a cross-sectional study
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…
Integrating the Comfort Theory Into Pediatric Primary Palliative Care to Improve Access to Care
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…
The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital
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…
Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity
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…
The use of a theatre workshop in developing effective communication in paediatric end of life care
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…
Children's fears 2-13 months after sibling NICU/PICU/emergency department death
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…
End-of-Life Decisions 20 Years after EURONIC: Neonatologists' Self-Reported Practices, Attitudes, and Treatment Choices in Germany, Switzerland, and Austria
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…
Psychosocial factors related with caregiver burden among families of children with chronic conditions
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…
The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
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…
Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
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.
Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors
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,…
A novel classification system for research reporting in rare and progressive genetic conditions
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.…