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 2726–2750 of 4332 publications
Shared spiritual beliefs between adolescents with cancer and their families
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an i…
Shifting Provider Attitudes and Institutional Resources Surrounding Resuscitation at the Limit of Gestational Viability
Objective This study aimed to provide contemporary data regarding provider perceptions of appropriate care for resuscitation and stabilization of periviable infants and institutional resources available to providers. Study Design A Qualtrics survey was emailed…
Sibling mortality burden in low-income countries: A descriptive analysis of sibling death in Africa, Asia, and Latin America and the Caribbean
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and mortality in lower…
Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs, factors associat…
Spanish Adaptation of the Pediatric Memorial Symptom Assessment Scale for Children, Teens, and Caregivers
CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate Pediatric-MS…
Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review
Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric palliativ…
Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of…
Speech-Language Pathologists in Pediatric Palliative Care: An International Study of Perceptions and Experiences
Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients, families,…
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with t…
SPORcast – Podcast
A Podcast series discussing the Standards for Patient-Oriented Research from the west coast of Canada. Hosts: Beverley Pomeroy and Lisa Ridgway. SPORcast aims to inspire Patients / Families, Clinicians, Academics and Decision Makers to get involved and create …
State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children
BACKGROUND AND OBJECTIVES: Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home nursing to…
Stillbirth memento photography
Research into stillbirth memento photography shows the practice to be welcomed by the bereaved. The visual attributes and content of stillbirth memento photographs are yet to be rigorously analysed however, representing a significant gap in current understandi…
Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed toward…
Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program
Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles. Recent findings: PnPC is a new concept in neonatal intensive care approa…
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their c…
Supporting the Decision Making of Children With Cancer: A Meta-synthesis
Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making proces…
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatrici…
Survival and causes of death in extremely preterm infants in the Netherlands
OBJECTIVE: In the Netherlands, the threshold for offering active treatment for spontaneous birth was lowered from 25(+0) to 24(+0) weeks' gestation in 2010. This study aimed to evaluate the impact of guideline implementation on survival and causes and timing o…
Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cance…
Teaching Pediatric Palliative Care Communication Skills to Fourth-Year Medical Students Through Role-Play
INTRODUCTION: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care co…
Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an un…
Telehealth acceptability for children, family, and adult hospice nurses when integrating the pediatric palliative inpatient provider during sequential rural home hospice visits
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective(s): Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-base…
Telemedicine: the Pediatric Palliative Perspective (FR476)
Objectives: * Describe the logistics of using telemedicine through an outpatient Pediatric Palliative Clinic. * Describe the experience of using telemedicine from the perspective of the parent, nurse, and physician.
The 3 "c's" in the physician-parent alliance in pediatric oncology
Background/Purpose: Pediatric oncologists face challenges when treating children with cancer. These include the emotional challenges of caring for very sick children and the challenges associated with communicating difficult news (ie, prognosis, test results, …
The Chameleon Project: A children's end of life care quality improvement project
Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with expertise in …