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 801–825 of 4332 publications
Application of the Adverse Childhood Experiences Framework to the NICU
Background:
Infants and families requiring neonatal intensive care unit (NICU) care often experience significant stress and trauma during the earliest period of the infant's life, leading to increased risks for poorer infant and family outcomes. There is a n…
A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care
Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically meaningful com…
A PROSPECTIVE REVIEW OF PAEDIATRIC TRAINEES EXPOSURE TO PALLIATIVE CARE IN IRISH HOSPITALS
Aim Paediatric palliative care (PPC) is an ever evolving speciality in Ireland. It is recommended that all healthcare professionals involved in the care of children living with a life-limiting condition need to have an understanding of the core principals of P…
A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies
Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of interventions is compl…
A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care
Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our goal was to …
A Rapid Review on Shared Decision Making in Pediatric Palliative Care and End-of-Life Care: Implications for Clinical Practice, Research, and Policy
Abstract
Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of seriously…
A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT
Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A retrospective audit of…
A review of instruments measuring the basic knowledge of palliative care concepts in teenagers
This article reviews the literature for tools that measure the knowledge of basic palliative care concepts in teenagers as set forth by the World Health Organization who challenged Health Promoting Schools to provide health literacy and to increase knowledge o…
Assessing Pediatric Resident Needs in Grief and Bereavement Education
Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families.
Objectives: This work aims to as…
Association of inpatient and outpatient pediatric palliative care with healthcare utilization and end-of-life outcomes in pediatric oncology
BACKGROUND: Pediatric palliative care (PPC) is associated with improved end-of-life (EOL) outcomes. Inpatient and outpatient PPC have unique roles during the disease course. Yet, it is unknown whether the location of PPC receipt (inpatient vs. outpatient) is a…
A systematic review and meta-analysis focusing on the use of ayurvedic medicine in cerebral palsy
Integrative practices have been incorporated into palliative care to provide holistic and multidimensional care for patients. This study aims to identify the scope of integrative practices, specifically whole medical systems, and demonstrate its safety and eff…
“At Least I Can Push this Morphine”:PICU Nurses’ Approaches to Suffering Among Dying Children
Context: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children'…
Attitudes and Experiences of Community Palliative Care Nurses Regarding Pediatric Home-Based End-of-Life Care: A Statewide Survey
Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at ho…
Attitudes of French laypeople toward children's medically-assisted dying
The issue of medically-assisted dying in pediatric care, including euthanasia and deep sedation, is ethically complex. Despite its relevance, no research has applied Information Integration Theory to evaluate the acceptability of these practices in pediatric c…
Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence
Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit.
Aim(s): Appraise the evidence to identify factors influencing referral and access to children's palliative car…
Barriers and facilitators to accessing pediatric specialty care for rural-dwelling children with complex chronic conditions: An integrative review
Problem: Pediatric specialty services are often geographically concentrated in urban areas, leaving up to 1 in 5 rural-dwelling children in the United States without access to advanced care. The purpose of this review was to identify and review extant literatu…
Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital
Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare professio…
Benefit-finding in children with advanced cancer and their parents
OBJECTIVES: Although pediatric cancer often causes significant stress for families, most childhood cancer survivors are resilient and do not exhibit severe or lasting psychopathology. Research demonstrates some survivors may report benefit-finding or positive …
Benefits of Respite Services on the Psycho-Emotional State of Families of Children Admitted to Hospice Palliative Care Unit: Preliminary Study on Parents' Perceptions
BACKGROUND: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care…
Bereaved parent preferences on quality end-of-life care for children with cancer in the South
Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South.
Method(s): Semi-structured interviews were conducted with parents of children who died of cancer >=6 mon…
Bereaved Parents' Change in Mental Health during a Dyadic Diary
Recent years have seen a shift in the number of bereavement studies examining daily grief processes, but our knowledge is still limited due to the lack of dyadic research. In this paper, we explored the change in mental health in the course of a seven-day dyad…
Bereaved parents’ perceptions of their cancer-ill child’s last month with or without palliative care - a nationwide study
Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative car…
Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review
OBJECTIVE: The objective of the scoping review was to explore the evidence and describe what is known about perinatal bereavement care guidelines provided within health care facilities prior to discharge. Additionally, the review sought to identify what is kno…
Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program
Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where resources coul…
Bereavement, Palliative, and End-of-Life Education Needs Assessment
INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's hospitals tha…