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 251–275 of 4332 publications
Quality of End-of-Life Care for Children Dying of Cancer: A Retrospective EHR Review
Background. Cancer is the leading cause of disease-related death in children in the US, making end-of-life (EOL) care a critical part of pediatric oncology (1). However, until recently, there were no quality measures (QM) for EOL care for children with cancer,…
Quality of life and research benefit and burden in siblings of children with life-limiting conditions: a prospective multicentre cohort study
BACKGROUND: Siblings of children suffering from a life-limiting condition (LLC) may experience impaired psychological and social well-being and strained family functioning. Due in part to concerns about research burden, evidence on siblings' quality of life (Q…
Race, Ethnicity, and Social Determinants of Health in PICU Mode of Death: Single-Center Retrospective Cohort Study
IMPORTANCE: Black and Hispanic/Latino patients are underrepresented in pediatric mode of death (MOD) studies. Although significant disparities have been reported, the associations of MOD with patient-level social determinants of health (SDOH) and the Child Opp…
Reactions, Adaptation, and Support Needs of Siblings of Children with a Life-Limiting Disease: The Parents’ Experiences
Abstract
Background/Objectives: Siblings of children with the life-limiting disease Metachromatic Leukodystrophy (MLD) are growing up witnessing rapid disease progression and death, affecting development and psychological wellbeing. Family-centred palliative c…
Regional Pediatric Education and Assistance Collaborative for Hospice Nurses (REACH): A Tele-Educational Intervention
Outcomes
1. Describe the critical need for pediatric specific education and support for hospice nurse and identify current barriers to developing an accessible and feasible educational initiative across the Mid-South Region.
2. Characterize an approach for col…
Religion and spirituality in pediatric end-of-life: a systematic review
Objectives
Spirituality is a recognized element of palliative care, with documented benefits for adult patients. However, limited research exists on how religion and spirituality affect children at end-of-life (EOL) and their parents. This review aimed to eval…
Responding to Parental Requests for Potentially Nonbeneficial Treatment in Life-Threatening Situations: Technical Report
Although consensus on a medical treatment plan is ideally achieved through a process of shared decision making, disagreements about whether life-sustaining interventions should be initiated or continued can occur and are sometimes difficult to resolve. When pa…
Retrieval-Augmented Generation (RAG) AI for End-of-Life Support in Pediatric HCT: Bridging Information Gaps for Patients and Caregivers on Palliative Care
Pediatric patients who have undergone hematopoietic cell transplantation (HCT) often face complex, life-limiting complications or disease relapse, leading to the difficult decision to transition to end-of-life (EOL) and palliative care (PC). In this context, p…
Role of Sense of Coherence in Mediating the Relationship Between End-of-Life Caregiving Burden and Bereavement Depressive-Symptom Trajectory
Background:
The results of meta-analyses indicate sense of coherence (SOC) has a positive effect in terms of reducing subjective caregiving burden and depressive symptoms in family caregivers. However, the mechanism by which SOC mediates psychological distress…
Ronan and the Endless Sea of Stars: A Graphic Memoir
This article focuses on *Ronan and the Endless Sea of Stars*, a 2022 graphic memoir by Rick Louis with art by Lara Antal, which explores the emotional and caregiving challenges faced by parents of a terminally ill child diagnosed with Tay-Sachs disease. The me…
Ruminative thoughts and sleep disturbances among mothers of children in the palliative care unit: A phenomenological study
BACKGROUND: Recent studies have indicated that mothers whose children receive palliative care frequently engage in repetitive negative thought patterns, or ruminative thinking, when confronted with intense stressors. AIM: The present study was aimed to explore…
Shifting sands: How parents engage with the idea of their child's death
Objectives.: While parental prognostic awareness is a vital concept, its complexity can sometimes be underestimated. Our study aimed to understand how parents of children with serious illness engage with the idea of their child's death from a lived experience …
Shifting the narrative: reframing paediatric palliative care to enable earlier engagement
Background: Paediatric palliative care (PPC) provides holistic support for babies, children and young people with chronic and complex conditions and their families when facing uncertainty about the future. Although early PPC involvement improves symptom manage…
Silences, voices and losses: maternal experience in communicating bad news in a neonatal Intensive Care Unit
This article aims to analyze the mothers' experience related to communication in the Neonatal Intensive Care Unit (NICU), within the context of palliative care, with an emphasis on the communication of bad news. This is a qualitative study using a narrative ap…
Silent wounds: violence and adverse experiences in parents caring for terminally ill children in palliative care
BACKGROUND: Primary caregivers of paediatric palliative care patients-mostly women-are disproportionately exposed to adverse events and violence, both directly related to the experience of disease and to other stressful life events. These experiences have been…
Sleep disorders in children managed in the pediatric palliative care unit of a tertiary hospital
Introduction In pediatric palliative care, 30% of patients suffer from cancer and the remaining 70% suffer mainly from neurologic, metabolic and genetic disorders. Sleep disorders affect 30% of healthy preschool children and up to 80% of neurologic patients, s…
Sleep Quality of Children and Caregivers in Pediatric Palliative Care: A Single-Center Cross-Sectional Study
Objectives Having a child with a life-limiting or life-threatening illness affects the lives of family members. Sleep disorders are among the most common symptoms in pediatric palliative care, but strategies for symptom management associated with sleep disorde…
Social Determinants of Health And End-Of-Life Circumstances in A Quaternary Children's Hospital
CONTEXT: Inequitable access to quality care based on social determinants of health (SDoH) adversely impacts outcomes. Prior studies suggest that disparities extend to end-of-life and subspecialty pediatric palliative care (SPPC) utilization, although pediatric…
Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life
Rationale:
Ensuring high-quality end-of-life (EOL) care for neonatal and pediatric patients and their families in the ICU requires a comprehensive, evidence-based, multidisciplinary approach.
Objectives:
To develop and provide evidence-based recommendations f…
Storytelling Intervention Relieved Pain During Tracheostomy Suction in Children Under Palliative Care: A Randomised Controlled Trial
Background
Aspiration causes pain in children receiving palliative care. This study evaluated the effectiveness of storytelling and cartoon watching in reducing pain during aspiration procedures in palliative care for children aged 1–3 years.
Methods
Using a …
Structural and Organizational Dimensions of Compassion Fatigue in Pediatric Oncology Nursing: A Qualitative Study
Pediatric oncology nursing is among the highest-intensity care specialties, exposing nurses to repeated child death and sustained emotional investment in family relationships. This occupational burden is a recognized psychosocial risk factor and a driver of co…
Subcutaneous Drug Administration in Pediatric Palliative Home Care: A Multicenter Prospective Study
Context
(Electronic) patient reported outcome measures ((e)PROMs) enable the systematic assessment of patients’ health status and treatment needs. However, their targeted use in pediatric palliative home care (PPHC) remains limited, as existing instruments are…
SUDEP awareness and effect on parental trauma, grief, and coping after the death of a child: A qualitative investigation
Background and objectives: Sudden unexpected death in epilepsy (SUDEP) is the leading cause of seizure-related deaths in people with epilepsy. Despite evidence that SUDEP counseling does not cause stress, improves treatment adherence, and empowers people with …
Surgeon Perspectives on Cleft Lip and Palate Repair in Patients With Life-Limiting and Terminal Illnesses: An ACPA Member Survey
Objective To investigate operative experiences and perspectives of surgeons presented with cleft lip (CL) and/or palate (CP) in children with life-limiting and terminal illnesses. DesignSurvey study. Setting Electronic.Patients, ParticipantsAmerican Cleft Pala…
Surgical interventions for children receiving palliative care: organizational, clinical, and ethical aspects
BACKGROUND: A current trend in Russian pediatrics is an increase in the number of inpatient palliative care units for children and, accordingly, the number of beds and patients in this population. AIM: To identify the need for various types, forms, and techniq…