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 751–775 of 4332 publications
Types of Challenges and Barriers in Accessing Paediatric Palliative Care in Romania: A Qualitative Study Based on Focus Groups Guided by a Semi-Structured Discussion Guide
Background and Objectives: Paediatric palliative care in Romania is underdeveloped and unevenly distributed, which creates major difficulties in accessing services for children with life-limiting illnesses and their families. The lack of a dedicated national s…
Understanding complexity in pediatric palliative care: A qualitative study of specialist physicians’ perception
Objectives
Studies addressing the complexity of pediatric palliative care are highly limited. The aim of this qualitative study was to identify the criteria of this complexity and, more broadly, to provide insight into this issue by analyzing the perception of…
Understanding of Pediatric Palliative Care Among Medical Language Interpreters
Literature shows the importance of utilizing medical language interpreters (MLI) for patients and families with limited English proficiency for discussions regarding end-of-life (EOL) and/or advance care planning (ACP). Fewer studies have examined methods to e…
Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities
Abstract
The inclusion of health-related quality of life (HRQoL) impacts on informal carers in health technology assessments (HTAs) is lacking due, primarily, to a deficiency in evidence and methodological issues on how informal carer HRQoL is captured and inc…
Understanding Why Parents Say Yes or No to Organ Donation When Their Child Dies: Mixed-Methods Study
Aim
To explore why parents consent to or decline organ donation after their child's death and identify the factors that influence their decision-making.
Design
Mixed-methods analysis of routinely collected quantitative and qualitative data from 594 cases in t…
Unseen, Unrelenting, and Uncertain: Caregiver-Identified Targets for Pediatric Palliative Care
Background & Objective Parent caregivers of children with medical complexity (CMC) provide continuous, multidimensional care over decades. Given that the growing CMC population now comprises most of pediatric palliative care (PPC) patients, palliative care cli…
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…
Unused opioids following palliative care for children at home: A missed opportunity for opioid stewardship?
Context: Opioids are often a key component of compassionate end-of-life care for children at home. However, after a child dies, unused opioids pose a risk for misuse or diversion, thereby contributing to the ongoing opioid crisis.
Objectives: This exploratory…
Using discrete choice experiments to elicit palliative care preferences in lower middle-income countries: An exploratory study in Bhutan
Background:
Design and delivery of specific palliative care in many lower middle-income countries such as Bhutan remains limited. Designing care programmes to respond to the needs of patients and family networks is essential, but evidence on these preferences …
Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in a community setting: Does it facilitate best interests decision-making?
When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby’s death before or soon after birth, they experience a range of complex emotions. Perhaps paradoxically, one com…
Validation of the Turkish adaptation of FACETS-OF-PPC: a multidimensional outcome measure for pediatric palliative care
Introduction: This study aims to validate the Turkish version of the Family-Centered Multidimensional Outcome Measure for Pediatric Palliative Care (FACETS-OF-PPC), originally developed in Germany for children with severe neurological impairments and their fam…
Value-Based Factors Contributing to End-of-Life Decision-Making in a Pediatric Intensive Care Unit
Background: Although the pediatric intensive care unit (PICU) is associated with life-prolonging therapies, greater than 80% of families elect to forego this treatment within 24 hours of a child's death. The value-based factors that influence this decision rem…
Virtual reality as a tool to promote healthcare providers wellbeing in pediatric palliative care
Background
The pediatric palliative care (PPC) team’s mission is to assist and promote the highest quality of life for children with life-threatening and life-limiting illnesses and their families. The whole care of these patients implies sometimes challenging…
Voices of Children with Cancer and Their Siblings in the Family Talk Intervention
Background: Children in pediatric oncology report unmet needs related to communication and information about the illness, care involvement, and psychosocial support. Supporting the whole family involves challenges, with a risk that children’s voices are not he…
Voices of experience: what Dutch parents teach us about values and intuition in periviable decisions
Objective: When extremely premature birth at the limits of viability is imminent, shared decision-making with parents regarding the infant's treatment is widely recommended. Aligning decisions with parental values can be challenging. So, this study aims to get…
Vulnerabilities and Missed Chances: The Dynamics in the Relationship Between Parents of Disabled Children and Professionals in the Context of Chronic Sorrow
Summary
The study explored how chronic sorrow in parents of disabled children impacts everyday interactions between parents and professionals in caregiving contexts. Chronic sorrow, characterized by ongoing feelings of grief and loss in parents, related to th…
“We are running on the fumes of goodwill” Professionals’ experiences of delivering 24/7 end-of-life care to children and their families: a qualitative study
Despite recent improvements, there is still stark inequity in the funding and provision of 24/7 end-of-life care for children, resulting in many families not receiving the support they need. To inform, plan and implement service changes it is important to take…
Web-based psychoeducational intervention for bereaved parents
Background:
There is a lack of theoretically sound, scientifically-tested interventions for bereaved parents.
Aims:
To describe the acceptability and feasibility testing of an online grief-support-resource platform for bereaved parents.
Methods:
Participants…
“We’re going to get through this together”: patient, parent, and oncologist recommendations for providing emotional support in advanced childhood cancer
A diagnosis of pediatric cancer generates emotional distress for patients and parents, particularly during prognostic discussions in the context of upsetting information and uncertainty. Emotional support from pediatric oncologists is cited as a key factor in …
"We're teetering on unsteady ground" parents' experiences of accessing 24/7 paediatric end-of-life care: a qualitative study
Background: Providing high quality around-the-clock care, is key to supporting families in their preferred place of care. Changing symptoms and parents' distress cannot wait for 'opening hours'. Yet in the UK, 24/7 children's end-of-life care remains a signifi…
"We Were Still Left in the Back Field, Not Knowing": Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication
PURPOSE: Patient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent …
"What about Your Social Worker?" Professionals and Families' Perceptions of Pediatric Palliative Care Social Work: A Qualitative Study
This article offers an in-depth examination of the social worker's role in pediatric palliative care, focusing on their skills and scope of intervention. This study was conducted to understand perceptions of the social worker's contributions within a multidisc…
What are the greatest opportunities for innovation to improve access to and quality of palliative care services to children? A qualitative interview study
Background: Innovation is required within children's palliative care (CPC) to improve access to and quality of care. Existing research demonstrates a lack of access to CPC worldwide. This study aimed to explore the current opportunities for innovation within C…
What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents
Background: Globally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves.
Objective: We aimed to determine what con…
What do pediatric transplant physicians think about palliative care? Results from a national survey study
Abstract
The benefits of palliative care (PC) for hematopoietic cell transplant (HCT) patients are well established, however, uptake in pediatric HCT remains limited. To understand pediatric transplant physicians' attitudes towards PC, we conducted a cross-sec…