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 101–125 of 167 publications
Pediatric Chronic Critical Illness: Training teams to address the communication challenges of patients with repeated and prolonged hospitalizations
CONTEXT: Children with chronic critical illness (CCI) have repeated and prolonged hospitalizations. Discrete communication challenges characterize their inpatient care. OBJECTIVES: Develop, implement and evaluate a communication training for inpatient clinicia…
Pediatric Palliative Care in Oncology
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescent…
Pediatric Resident Perception and Participation in End-of-Life Care
BACKGROUND: Despite advances in medical care, pediatric deaths are still an unfortunate reality. Most of these deaths occur within a hospital setting. End-of-life care is an important part of medical care for children with serious illnesses. Despite the import…
Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): W…
Serious Illness Conversations in Pediatrics: A Case Review
The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their patient’s life in…
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…
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…
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…
The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health…
The Role of Palliative Care in Caring for the Families of Patients With COVID-19
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved on…
Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their c…
Translating Pediatric Hospital Interpreters' Feedback From Difficult Conversations into Improved Communication
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical interpreters…
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In th…
Communication about prognosis and end-of-life in pediatric organ failure and transplantation
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of…
Decisional burden among parents of children with cancer
BACKGROUND: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish. METHODS: This was a prospective cohort study of 372 parents of children with cancer and the…
End-of-life communication: a nationwide study of bereaved parents' perceptions
OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged 0-18 years d…
Impact of specialized pediatric palliative care programs on communication and decision-making
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central…
Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integ…
Racial and Ethnic Differences in Parental Decision-Making Roles in Pediatric Oncology
Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. Objective: To determine whether p…
Simulation-Based Palliative Care Communication for Pediatric Critical Care Fellows
BACKGROUND: Pediatric palliative care (PPC) education is lacking in pediatric critical care medicine (PCCM) fellowships, despite the desire of many program directors and fellows to expand difficult conversation training. Simulation-based training is an experie…
The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: a realist review of the literature
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their famil…
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, ca…