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 1–25 of 165 publications
Leveraging User Experience Design Expertise in Palliative Care Intervention Science
Background Palliative care interventions for children with serious illness require real-world design expertise to bring research to the bedside in ways that are engaging, effective, and feasible. Objective To describe the collaborative process of bringing an e…
Addressing Racism in Pediatric Serious Illness: Insights for Clinical Care and Advocacy
Inequitable care across racial groups has been a reality throughout the history of modern medicine. These inequities extend to children living with serious illness and impact their experiences within the healthcare system as well as their health outcomes. Whil…
Navigating Time-Critical Decisions in Pediatric Critical Care: A Proactive Communication Guide for Cultivating Prognostic Awareness
Background: Clinical teams face many barriers to communicating with the parents/caregivers of patients experiencing an acute decline. Outside of these time-critical situations, clinicians often can iteratively assess and cultivate prognostic awareness of the p…
One Meeting, Three Perspectives
In this narrative medicine essay, a mother, a palliative care physician, and a hospital chaplain describe a meeting discussing a young patient’s medical options for treating his rare brain tumor.
Teaching of Medical Ethics Regarding Children, Death and Dying, and Research at the Uniformed Services University of the Health Sciences (USUHS) During Its First Fifty Years
Introduction: The first class at USUHS took its initial course in medical ethics in 1977. I directed this course until recently when COVID first emerged. In this piece, I review what these students were taught during the first 3 of 8 class sessions involving c…
Unspoken
This is a tribute to the children and families who shaped us, taught us, and continue to guide our care. Their stories live on as lasting lessons in love, courage, and what it means to care. While recognition of the profound impact often remains unspoken, it i…
Effect of Sustaining a Perinatal Loss: Mothers’ Mental Health and Marital Satisfaction
Abstract
The occurrence of perinatal losses is an unfortunate, yet common degeneracy that implements perturbing taxation on the mental, emotional, and marital health of mothers considering the grief they impose. This study is a quantitative venture that utiliz…
Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy
Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve in pediatr…
First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review
Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without necessarily u…
Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Da…
Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program
Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to promote delivery…
Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs
Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs.
Objective(s): We asked outpatient PPC (OPPC) program leaders in the United States about clinic development exp…
Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families
CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC…
Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions
CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).
OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe healthcare serv…
Short Term Coping-Behaviors and Postpartum Health in a Population-Based Study of Women with a Live Birth, Stillbirth, or Neonatal Death
Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss - stillbirth or ne…
Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents
Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care needed fo…
Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*
OBJECTIVES:
To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care.
DESIGN:
Cross-sectional survey of United States National Residency Matching Program pediatric fellows training in critical…
Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit
Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences.
Objective(s): To examine sources of and changes in stress among parents of chil…
The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties
Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and qua…
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