Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 3051–3075 of 4332 publications
Survival and Health Care Use After Feeding Tube Placement in Children With Neurologic Impairment
BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population.
METHODS: This is a population-ba…
Survival, short-term morbidity of extremely low gestational age infants and their predictors
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate ante…
Symptoms and management of children with incurable cancer in mainland China
PURPOSE: This study was designed to report information regarding symptomology of incurable pediatric cancer to promote proactive medicine and support for children and their families in the palliative phase in Mainland China. METHOD: A multi-center retrospectiv…
Systematic Symptom Reporting by Pediatric Palliative Care Patients with Cancer: A Preliminary Report
BACKGROUND: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple…
The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with com…
The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence on a child’…
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 improve i…
The chameleon project: A children's end of life care quality improvement project: Preliminary results
Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been funded for 12 …
The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections
BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wa…
The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health car…
The core features and outcomes of a specialised camp programme for children with life-limiting conditions and their families: A qualitative multi-perspective approach
Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial ad…
The effect of web-based pediatric palliative care education on the palliative care knowledge level and practices of nursing students
PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.
The Effects of Chronic Disease on Ambulatory Care–Sensitive Hospitalizations for Children or Youth
Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research investigates, for C/…
The experience of parents living with a child with cancer at the end of life
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in T…
The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. Durin…
The experiences of bereaved family caregivers with advance care planning for children with medical complexity
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortali…
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 personal impa…
The 'good death' in pediatric oncology
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the p…
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-ma…
The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms,…
The Impact of Provider Education on Pediatric Palliative Care Referral
INTRODUCTION: Palliative care can significantly benefit children managing a life-limiting illness; unfortunately, services are still generally reserved for end of life. The aim of this project was to demonstrate how established guidelines and provider educatio…
The Limits of "Life-Limiting"
The field of hospice and palliative medicine has struggled to define the conditions that are appropriate for palliative care. "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which is a neces…
The Long Road to Farewell: The Needs of Families With Dying Children
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care pro…
The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy
Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the long-term car…