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 1676–1700 of 4332 publications
Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries
BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can compr…
Facilitators and Barriers Affecting Implementation of Neonatal Palliative Care by Nurses in Mainland China
Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainla…
Facilitators and barriers to empowerment in children and young people with cystic fibrosis: a meta-synthesis of the qualitative literature
PURPOSE: Patient empowerment may be particularly important in children and young people (CYP) with CF, due to high treatment burden and limited peer support opportunities. This review aimed to meta-synthesize the qualitative literature pertaining to empowermen…
Facing the loss of siblings in childhood: Interactions and dynamics between bereaved siblings and their parents
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 gap by expl…
Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare …
Factors associated with admission of children to an intensive care unit and readmission to hospital within 28 days of discharge: A population-based study
AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and factors asso…
Factors associated with mental health service use among families bereaved by pediatric cancer
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Ber…
Factors impacting pediatric registered nurse attitudes toward caring for dying children and their families: A descriptive study
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 study with tw…
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a inte…
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of th…
Family-centered care and pediatric death in the emergency department: A qualitative study using framework analysis
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 emergency dep…
Family experiences with palliative care in freestanding paediatric hospices: a scoping review
BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric …
Finding a New Normal: Maternal Experiences Transitioning to Home From the Neonatal Intensive Care Unit Caring for Technology-Dependent Infants
Background:
Infants discharged from the neonatal intensive care unit (NICU) dependent on medical technology (eg, respiratory or nutritional support) are a growing vulnerable population. These infants are medically fragile, prone to emergency department visit…
Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation
Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance…
Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment
OBJECTIVES: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often l…
From Pediatric to Adult Palliative Care Service: The Continuity of Care
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can em…
Goals of Care Rated by Parents of Children Receiving Pediatric Palliative Care: A Cohort Study Over Two Years (RP409)
Outcomes 1. Illustrate the value of assessing the importance that parents of children with serious illness place on several goals of care 2. Argue for respectful and routine reassessment of parents’ goals of care for their children with serious illness Importa…
Grief in critical care nurses after pediatric suffering and death
BACKGROUND: Working in the pediatric intensive care unit (PICU) exposes nurses to intense and recurrent experiences with loss. Such experiences may result in unresolved grief or despair among these providers. Although previous studies have explored grief withi…
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be usefu…
Grieving Experiences of Parents with Children in End-of-Life Care-A Qualitative Review Protocol
Parents that accompany their children in end-of-life care until death go through a devastating, complex and vulnerable situation, which is experienced in a unique way and with individual needs, given the specificity of the palliative care setting in which it o…
Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults
Online health communities (OHCs) have been identified as important outlets for social support and community connection for adolescents and young adults (AYAs) living with chronic illnesses. Despite evident benefits, there remains a gap in research on methods t…
Guidance for Pediatric End-of-Life Care
The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their…
Healthcare for children depend on medical technology and parental quality of life in Japan
BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary caregivers o…
Health Care Providers’ Perspectives on COVID-19 and Medical Neglect in Children with Life-Threatening Complex Chronic Conditions
Little is known regarding medical neglect in children with Life-Threatening Complex Chronic Conditions (LT-CCCs). We examined the impact of COVID-19 on concern for medical neglect in this population.