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 151–175 of 4332 publications
Integrating Palliative Care in Phase 1 Pediatric Oncology Trials: Parent Perspectives
Purpose
Early-Phase clinical trials in pediatric oncology are designed to test drug safety and feasibility, offering minimal direct therapeutic benefit (5%–10%) while carrying a risk of toxicity, death, and worsened symptom burden. Pediatric palliative care (P…
Integrating Palliative Care in the Care of Children With Heart Failure: Findings and Recommendations From a 5-Year Experience in a Tertiary Care Center
Heart failure is becoming an increasingly cause of hospital admissions in the pediatric population, linked to significant morbidity and mortality. Despite advances, end-stage heart disease still causes significant symptoms, extended hospitalizations, and reduc…
Integration of Pediatric Palliative Care in Oncology: A Scoping Review
Objective
Pediatric palliative care (PPC) enhances quality of life for children with cancer and their families, yet its systematic integration into oncology practice remains limited, particularly in hospital-based care. This scoping review aimed to map and syn…
Interdisciplinary collaboration in pediatric palliative care: a qualitative study on barriers and facilitators as perceived by parents and healthcare professionals
Pediatric palliative care (PPC) requires involvement of various healthcare professionals (HCPs) across home and hospital settings to address the complex needs of children and families. Interdisciplinary collaboration (IDC) among HCPs and parents is crucial for…
Introducing the Descriptive Framework for Assessing Epidemiological Cross-National Transferability: Application to Extrapolating Pediatric Life-Limiting Condition Prevalence Between Two European Countries
Background: The transfer of epidemiological parameters, such as prevalence, between nations with limited data is a common but unstructured process. Determining how pediatric life-limiting condition (LLC) prevalence rates from one country can be applied to anot…
Involving Nonspeaking and Speaking Children in Clinical Encounters: An Observational Study of Real-World Clinical Encounters
Aim
This study aimed to identify diverse ways nonspeaking and speaking children are involved in clinical encounters.
Methods
The study analysed video recordings of paediatric palliative care encounters in Australia. Conversation analytic coding methods were u…
"It Is Within the Gift of Filmmakers and TV Producers to Educate Society on the Living that Happens for People with Life-Limiting Conditions": A Mixed-Method Study of Health Care Staff About the Portrayal of Children and Young People with Life-Limiting Co
Background:
Given the increasing prevalence of children and young people with life-limiting conditions (CYP LLC), media plays a pivotal role in shaping public understanding, highlighting both the challenges and realities faced by these children and their famil…
"It's like a fireball dropped in my lap": Experiences of social workers working in pediatric palliative care
The aim of this qualitative study is to examine the experiences of social workers in pediatric palliative care. In-depth interviews were conducted with eight social workers in pediatric palliative care clinics. Data were analyzed using content analysis, produc…
"It's the fear of the unknown" clinicians' perceptions on paediatric compassionate transport to preferred place of death: A qualitative descriptive study
Background
Compassionate transport is used to transfer dying neonates and children from hospital wards to their preferred place for death, such as home. For families, choice of where their child will die is important and meaningful. Yet the child’s physiologic…
Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan
Objectives:
The quality of dying and death (QODD) of children on the PICU is essential for them, their families, and carers at the end-of-life. Currently, there are no standard instruments for measuring QODD in PICUs in Japan (J). We have developed a Japanese …
Journeys Through the Terrain of Grief: Bereaved Parents' Narratives Across Time
The death of a parent's child is a particularly devastating form of loss, and there remains a need to further understand bereaved parents' experiences to inform the support offered to them. This study makes a unique contribution to this field by focusing on la…
Key practical aspects of perinatal palliative care: a scoping review mapping and grading their coverage in the literature
BACKGROUND: Despite growing recognition of the importance of perinatal palliative care (PnPC) as a comprehensive approach to supporting seriously ill fetuses or neonates and their families, its implementation in clinical practice remains nascent and heterogene…
Lactation During Perinatal Bereavement From the Perspective of Families and Support Providers: A Scoping Review
Background: Perinatal loss is a time of intense grief for affected parents. Due to lactation physiology, bereaved mothers still experience the onset of lactation and are left with milk but no child to feed. Aim: To explore what is known about the lactation exp…
Leveraging AI-Powered Cultural Intelligence to Enhance Pediatric Critical Care Nurses' Competencies in End-of-Life Care
Background: In the modern Pediatric Intensive Care Units (PICUs), nurses manage high-stakes decisions under immense pressure. While AI has traditionally focused on clinical tasks like sepsis prediction. Critically ill children often come from diverse backgroun…
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…
Life Duration of Pediatric Patients with Cancer Enrolled on Concurrent Hospice Care: A Retrospective Decedent Study
Background: The Affordable Care Act established concurrent hospice care for children, yet access and timely referral remain limited. Pediatric oncology prognostic trajectories are variable, complicating hospice timing.Objective: To quantify survival after hosp…
Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity
Children with medical complexity (CMC) frequently experience recurrent deterioration requiring life-sustaining treatment (LST) decisions in the pediatric intensive care unit. Parents serve as primary caregivers and decision makers; however, how accumulated car…
Listening to Young People on Childhood Death: A Youth-Focused Participatory Approach to Children's Palliative and End-of-Life Research and Policymaking
Over the past three decades, children and youth (‘young people’) have been increasingly conceptualised as moral agents with rights and capacities to be meaningfully engaged in decisions affecting them. While evidence suggests that social spaces are opening to …
Lived experiences of healthcare personnel in supporting parents around neonatal death: encounters, challenges and meaning
Objective: To explore healthcare personnel's (HCP) lived experiences of caring for dying newborns and supporting bereaved parents in neonatal intensive care unit (NICU), drawing on relational, ethical and organisational factors.
Design: Qualitative study usin…
Loading phenobarbital in paediatric home-based terminal care: A case series
Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase. Case presentation: Three terminal home-based paediatric cases with r…
Long-term grief experiences of parents who lost a child to cancer- Results from a multicenter cross-sectional study
Background: Childhood cancer deaths may be associated with persistent parental grief. Evidence on grief symptoms beyond ten years post-loss remains limited. Aim(s): We described grief symptoms, identified grief profiles, and examined associations between grief…
Loss at a distance, fatherhood rewritten: Perinatal bereavement and subsequent cross-border surrogacy arrangements in gay couples and single fathers
Surrogacy is an increasingly used—yet unevenly accessible—pathway to parenthood for gay couples and single men. This qualitative study examined how fathers experience and navigate perinatal loss in cross-border surrogacy, and how they reenter surrogacy arrange…
Management of movement disorders in chronic neurological conditions and palliative care: a retrospective cohort study
Background Movement disorders are prevalent in pediatric palliative care, complicating chronic neurological conditions. Comprehensive studies on their characteristics and management remain limited. This study characterizes movement disorders and their manageme…
Mapping the palliative care needs of children with cancer: a scoping review through the bio-psycho-socio-spiritual lens
Background: Paediatric palliative care (PPC) is essential in alleviating the multidimensional burden of cancer for children and their families, yet their needs remain insufficiently understood across diverse settings. This scoping review mapped the palliative …