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 51–75 of 4332 publications
Coping mechanisms used by nurses caring for dying children: a literature review
Witnessing traumatic events such as the death and dying of patients without adequate support can have a negative effect on patient care and clinician well-being. This qualitative literature review aimed to explore and identify the coping mechanisms used by nur…
Coping strategies of nurses facing pediatric death in oncology units: A qualitative study
The death of children in healthcare settings, particularly in oncology units, has profound, multifaceted, and emotionally distress impact on nurses. Implementing effective coping strategies is essential not only to improve the nurses' mental well-being but als…
Core Functions of Pediatric Cancer Communication in Clinical Notes by Pediatric Palliative Care Providers
Background The core functions of pediatric cancer communication are eight empirically based tasks that support effective communication between patients, families, and clinicians (1,2). Examining the presence of these core functions in pediatric palliative care…
Cost Implication of a Community-Based Pediatric Palliative Care Program
Background:
Massachusetts’ Pediatric Palliative Care Network (PPCN) program provides community-based pediatric palliative care (CBPPC) to children with life-limiting conditions and their families. PPCN offers comprehensive clinical services, integrative therap…
Cultural differences on baby loss experiences: A comparison of the US and New Zealand
Prior research has shown that the death of a baby (whether it be through miscarriage, stillbirth, or infant loss) can have profound effects on the parents involved. However, research has yet to adequately understand how these effects differ cross-culturally. O…
Culturally Informed Communication of Neonatal Death in Chinese Neonatal Intensive Care Units
This qualitative study describes the experiences of physicians and nurses about communicating with parents about neonatal death at 2 neonatal intensive care units (NICUs) in 2 hospitals in Yangzhou City, Jiangsu Province, China. Key Points: Question: What are …
Cultural sensitivity and emotional resilience education improve infant health and wellbeing in end-of-life care in neonatal intensive care units
Parents of infants on neonatal intensive care units (NICUs) experience high levels of emotional distress, requiring emotional support from practitioners. Caring for critically ill infants requires high levels of emotional and technical skills that nursing and …
Current prenatal counseling of congenital heart disease in trisomy 18, pediatric cardiologists' perspective: a Fetal Heart Society Research Collaborative Study
Objective: Survival outcomes are shifting in trisomy 18 as cardiac disease is being repaired in infancy reminiscent of trisomy 21. The landscape of prenatal counseling related to cardiac disease and trisomy 18 is unknown.
Study design: A survey was distribute…
Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care
OBJECTIVES: To characterize end-of-life (EOL) experiences of children and adults with heart disease who die in pediatric hospitals. METHOD(S): This multicenter retrospective study included patients with heart disease who died within 31 US pediatric referral ce…
Defining Roles in Pediatric Palliative Care: Perspectives From Oncology and Palliative Care Teams
Background: Early integration of pediatric palliative care (PPC) is associated with improved symptom management, quality of life, and healthcare utilization for children with cancer. Despite this, variation persists in how PPC is understood, operationalized, a…
Describing Deaths over a Decade: The Final Week of Life Among Hospitalized Children with Cancer
BACKGROUND AND OBJECTIVES: Little is known about the final week of life for inpatient pediatric oncology patients. The purpose of this study was to describe inpatient pediatric oncology deaths. METHODS: Retrospective chart review of all patients who died in a …
Developing a culturally relevant bereavement needs assessment tool (CANCOPE-PI) for caregivers of children with cancer in India: a participatory research approach
Background
The loss of a child is the most devastating type of bereavement. Despite higher childhood mortality, there is a critical gap in bereavement research within low- and middle-income countries (LMICs). Hence there is a pressing need to develop a cultura…
Development and Execution of a Pediatric Hospice and Palliative Medicine Fellowship in Latin America
Background: Pediatric hospice and palliative medicine (PHPM) is a growing subspecialty worldwide; however, formal graduate medical education pathways remain limited in low- and middle-income countries, including most of Latin America, constraining workforce de…
Development and Testing of VOICES-C: A Questionnaire for Assessing the Quality and Experiences of End-of-Life Care for Children and Their Families
Objective: The prevalence of children needing palliative or end-of-life care is increasing. However, no comprehensive tool exists to assess the experiences of such care. We describe the development and testing of VOICES-Children (VOICES-C): the first questionn…
Development of a parent survey to identify children with severe neurologic impairment and distress
Background/Rationale Children with severe neurological impairment (SNI) frequently experience moderate to severe recurrent pain, irritability, or discomfort (“distress”). To identify children with SNI and recurrent distress for a pilot randomized controlled tr…
Development of the Korean version of the Children's Palliative care Outcome Scale
PURPOSE: Although there is a need to evaluate the outcomes of children's palliative care, there is no scale that reflects children and families' perspectives in South Korea. This study aimed to develop the Korean version of the Children's Palliative Care Outco…
Diagnostic Uncertainty and Continuity in Pediatric Oncology: A Caregiver's Perspective
When my nephew, a 12-year-old boy with T-cell lymphoblastic lymphoma, passed away, it exposed the tension between clinical optimism and the unpredictable course of oncologic disease. A series of clinical emergencies (overlooked appendicolith, life-threatening …
Digital Health Perspectives and Opportunities in Pediatric Palliative Care: Results From a Focus Group
Introduction: Pediatric palliative care (PPC) is a multidisciplinary approach aimed at enhancing the quality of life of children with serious/terminal illnesses, also providing support to their families. PPC is provided in both primary and secondary care setti…
Discovering What Works Well: Exploring Primary Palliative Care Education in Pediatrics Residency Programs in Canada
Objective
To explore effective primary PC learning in Canadian pediatrics residency programs.
Methods
Using Appreciative Inquiry methodology, we focused on ‘‘what is working well’’ to explore resident learning. We purposively sampled 17 trainees (post-graduate…
Effectiveness of an Educational Program on Nurses' Competence Regarding Palliative Care of Children with Cancer in Mosul City
Introduction: Pediatric palliative care is essential for improving the quality of life of children with cancer and their families. Nurses play a critical role in delivering this care; however, many lack adequate training and competence in pediatric palliative …
Effectiveness of an end-of-life family support nursing educational program in neonatal intensive care units
This study evaluated an educational program developed to support nurses' attitudes, knowledge, and skills for end-of-life (EOL) family support in Neonatal Intensive Care Units (NICUs). A quasi-experimental one-group pretest–posttest study design was used. Part…
Effectiveness of Family-Focused End of Life and Bereavement Interventions Across Neonatal, Paediatric, and Adult Intensive Care: An Overview of Reviews
BACKGROUND: Intensive Care Units (ICUs) care for critically ill patients across all age groups, with many deaths occurring during or shortly after admission. For families, this can be associated with significant psychological distress, including prolonged grie…
Effectiveness of psychological interventions for children eligible for pediatric palliative care: systematic review and meta-analysis
Background
Pediatric palliative care (PPC) provides holistic and family-centered support that extends beyond end-of-life care. Children living with life-limiting or life-threatening conditions frequently experience significant emotional distress, psychosocial …
Effectiveness of psychological interventions for parents of children eligible for paediatric palliative care: a systematic review and meta-analysis
Background: Paediatric palliative care (PPC) is an early, holistic model addressing the physical, psychological, social, and spiritual needs of children with life-limiting or life-threatening conditions and their families. Parents frequently experience high ps…
Effect of Legacy-Making on Anticipatory Grief and Coping Among Mothers of Children with Cancer: A Randomized Clinical Trial
Objectives: One of the complex and challenging parental experiences when facing a child's cancer is anticipatory grief. This study aimed to evaluate the effect of legacy-making on anticipatory grief and coping strategies among mothers of children with cancer. …