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 376–400 of 4332 publications
Building capacity to treat childhood cancer in Papua New Guinea: 'It's a multidisciplinary village'
Childhood cancer outcomes in low- and middle-income countries are impacted by the presentation of advanced disease and limited diagnostic and treatment resources. Papua New Guinea is highly populated with significant health coverage and workforce difficulties,…
Caring Beyond Cure: Perspectives of Pediatric Oncology Nurses on End-of-Life Care
Pediatric oncology patients should receive high-quality end-of-life care when needed. Little is known about nurses' attitudes toward providing end-of-life care in pediatric oncology and the role of work experience in developing comfort with providing this care…
Caring for chronically critically ill children in the pediatric cardiac intensive care unit: Correlations of a primary palliative care intervention with clinical outcomes
Background
A growing number of pediatric patients admitted to the cardiac intensive care unit (CICU) meet the criteria of chronically critically ill (CCI), but there is little consensus on how to meet their distinct needs. A novel primary palliative care inter…
Centering Community Voices: Evaluating Stakeholder Engagement in Pediatric Palliative Care Research
Introduction Black and Native American children in the United States experience disparities in serious illness care and outcomes which are compounded by systemic inequities. These disparities necessitate research approaches that center the voices of racially m…
Challenges and dilemmas in providing continuous pediatric palliative care in Varazdin County - two narrative case presentations
In recent years, home-based palliative care has become increasingly important, allowing children to spend their final days in a familiar and loving environment, surrounded by family and friends. By presenting the following case studies, we aimed to highlight t…
Challenges, Benefits, and Future Directions of Pediatric Home-Based End-of-Life Care: A Qualitative Study
Objectives Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who are not specialist pediatric service providers. This study explores the challenges, benefits, and future directions of home-based EOL care as pe…
Characteristics of child development in the context of serious illness: a scoping review
Background: Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The aim of thi…
Child death review: understanding variations in practice using normalisation process theory
Background: In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do not attend …
Children's palliative care and public health: position statement
A public health approach to palliative care has been developed in adult palliative care over several years. Despite the concepts of health and wellbeing, and palliation, dying and death appearing at first to be contradictory, a cogent argument has been made to…
Children's palliative care perceptions and educational needs among healthcare professionals in humanitarian settings
Objectives: Explore humanitarian healthcare professionals' (HCPs) perceptions about implementing children's palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.
Methods…
Clinical complexity and need for palliative care in non-oncological patients with special health care needs
Categorizing the complexity of Children and Youth with Special Health Care Needs (CYSHCN) could be useful in guiding their need for pediatric palliative care (PPC). However, there are no studies that have evaluated this association. Objective: To evaluate the …
Clinical Dietitians' Perspectives on Nutritional Management in Children's Palliative Care: A Qualitative Study
Background: Feeding disorders and gastrointestinal problems are among the most prevalent concerns in children who are eligible for palliative care. Many of these children require medical nutrition therapy and benefit from the involvement of healthcare professi…
Clinical heterogeneity of adolescents referred to paediatric palliative care; a quantitative observational study
Objectives
Adolescents with life-limiting conditions are distinct from children or older adults in their palliative needs and developmental stage, yet, there is limited literature addressing this population. Our aim was to describe the characteristics of the a…
Clinician Perspectives on Compassionate Deactivation of Pediatric Ventricular Assist Devices
Following ventricular assist device (VAD) placement, families and clinicians often have differing perspectives. When adverse events reduce patients' quality of life, families and clinicians question the desirability of continuing VAD support. Given the increas…
Co-Design & Collaboration: Global Pediatric Palliative Care Research to Address Care Inequities
Over 97% of children needing palliative care live in low-and middle-income countries (LMICs) with most lacking access. However, most pediatric palliative care (PPC) research has been conducted in high-income countries. Generated knowledge may not translate acr…
Communicating after the Death of a Child: Bereaved Parent Insights on the GRIEV_ING Framework
Background: Communicating with a parent or guardian after their child's death is considered one of the most difficult tasks in medicine. While several frameworks have been developed to aid clinicians when delivering bad news, they are incomplete without the pe…
Communication About Prognosis Across Advancing Childhood Cancer: Preferences and Recommendations from Bereaved Parents
Background: Pediatric oncologists often defer or soften prognostic disclosure to shield parents from distressing information. However, unclear prognostic communication can shape treatment decisions, potentially compromising end-of-life care and contributing to…
Communication Preferences in Pediatric Palliative Care: Insights From Caregivers and Specialists-A Central-Eastern European Perspective
Effective communication is crucial in pediatric palliative care and is essential to facilitate shared decision making between families and the health care team. This study explored the communication preferences of caregivers and health care specialists in Cent…
COMMUNITY PAEDIATRIC MEDICATION LISTS FOR CHILDREN WITH COMPLEX AND PALLIATIVE CARE NEEDS
Context Children and young people have a risk of medication errors and those with complex and/or life limiting conditions have a higher risk due to polypharmacy, complex medication regimens, and frequent transitions of care, often with multiple organisations d…
Components of Family Meetings for Hospitalized Children With Serious Illness: A Scoping Review
Family meetings between pediatric clinicians and parents are used to facilitate in-depth discussions and decision-making about patient care. To guide implementation of family meetings for hospitalized children with medical complexity, this scoping review ident…
"Consider the Following Situation," Parental Treatment Preferences for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Plans
IntroductionCaring for a child with a rare disease frequently involves making difficult medical decisions with limited disease-specific information. Advance care planning can assist families in articulating their values and treatment preferences. We aimed to d…
Consulting With First Nations Communities to Develop Text-Based Support for Grieving Fathers
BACKGROUND: The loss occasioned through miscarriage, stillbirth or neonatal death is recognised as a traumatic event causing grief and sorrow in fathers. While the rate of Indigenous perinatal deaths is almost twice that of non-Indigenous, there is little supp…
Content and comprehensiveness of goals-of-care documentation in pediatric patients
Context: Documented goals-of-care (GOC) conversations promote goal-concordant care; few studies have evaluated the comprehensiveness of this documentation within pediatrics.
Objective: To evaluate the content of pediatric GOC documentation within a health sys…
Continuation of Potentially Inappropriate Life-Sustaining Therapies: Provider Perspectives
Context: Prior work examines provider perspectives on withholding potentially inappropriate life-sustaining treatments over family objections; however, data are limited regarding how physicians approach situations in which they are considering withholding or w…
Continuing bonds, complicated grief, and posttraumatic growth among bereaved parents after the loss of a child to cancer
Purpose: Bereaved parents who have lost a child to cancer often maintain ongoing connections with their deceased child. However, the interplay among continuing bonds, complicated grief, and posttraumatic growth remains unclear in Asian cultures, where societal…