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 676–700 of 4332 publications
Reducing inequity in the provision of children's palliative care in low- and middle- income countries: A focus on education and research
There are over 21 million children and their families globally who need palliative care,1 yet estimates suggest that less than 10% can access it. The greatest need for palliative care in children is in low- and middle-income countries, where 98% of the demand …
Reducing moral distress through interdisciplinary collaboration: the impact of a weekly palliative care and neonatology conference
Background: Moral distress is the experience of knowing what ethically right action to take, but being unable to act accordingly, due to external factors. It is an experience common to providers working in the neonatal intensive care unit (NICU) where care for…
Relationship Between Clinical Decision-Making and Moral Distress in Neonatal Intensive Care Unit Nurses: A Multicenter Cross-Sectional Correlational Descriptive Study
Background: In the neonatal intensive care unit (NICU), nurses care for premature and critically ill neonates, interact with parents, and make clinical decisions regarding the treatment of neonates in life-threatening conditions. The challenges of managing uns…
Relationship between parental distress and proxy symptom reports in pediatric palliative care
Context: In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients' symptoms is unknown.
Objective: To measure the influ…
Relationship Between Social Determinants of Health and Domains of Care Addressed During Pediatric Palliative Care Visits for Children with Cancer
Introduction: Pediatric palliative care (PPC) improves symptom management and end-of-life (EOL) outcomes. Disparities exist in access to PPC and EOL care related to social determinants of health. Less is known regarding how the content of PPC visits varies by …
Research poems: exploring the experience of parents of children who have died in the paediatric intensive care unit
Objective: The purpose of the article is to analyse the use of research poems to capture the essence of the lived experience of families who have lost their children in PICU.
Methods: Qualitative phenomenological study in the PICU of a high complexity hospita…
Research progress on hospice care preferences of parents of children with cancer
The objective of this study was to describe the experiences and perceptions of parents making palliative care decisions for children with end-stage malignancies. This qualitative study was conducted with 13 parents from 9 families of children with end-stage ma…
Retrospective Evaluation of Pediatric Emergency Department Visits of Children With Medical Complexity in a Tertiary Care Center in Italy
Objective: Children with medical complexity are a growing population with multiple conditions, medical device dependency and frequent need for emergency department (ED) visits; their care and management in an emergency setting may be challenging. The pediatric…
Risk Factors for Bloodstream Infections in Critically Ill Children: Gram-Negative Predominance and Complex Chronic Conditions
Aim: Bloodstream infections (BSIs) remain a significant cause of mortality in paediatric intensive care units (PICUs). This study aimed to identify risk factors associated with the aetiology and outcomes of hospital-acquired BSIs. Methods: This retrospective s…
Roles of pediatric surgeons in palliative pediatric oncology
Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology …
"Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs
Background & Purpose
Parents of children with medical complexity (CMC) provide continuous, intensive care that encompasses a range of technical tasks, emotional support, advocacy, and coordination within fragmented healthcare systems. Existing research often t…
Safety and feasibility of tracheostomy and gastrostomy home replacement: a five-year experience from a palliative care center
BackgroundChildren with medical complexities needing palliative care often rely on tracheostomy and gastrostomy tubes. As home-based care gains priority to improve well-being and reduce hospitalizations, this study evaluates the safety and feasibility of home …
Sharing in the community of having lost a child
What does it mean to share an experience of losing a child? Not solely to put such an experience into words, but also to speak of it to others who may share their own experiences of loss? What is shared in such moments of sharing? Here, we present a phenomenol…
Short-term outcomes of treatment limitation discussions in neonatal care units of tertiary care hospital in Karachi, Pakistan: a cross-sectional study
Objective: To determine the short-term outcomes of treatment limitation discussions (TLDs) in neonates with life-limiting conditions and life-threatening conditions.
Design: Descriptive cross-sectional study.
Settings: The study was conducted at the neonatal…
Spanish adaptation of the Perinatal Grief Intensity Scale
Aims/Background: Assessing the intensity of perinatal grief is very important for identifying the more complex cases in mothers and fathers. Despite this, there are few assessment tools available. The aim of this study was to analyse the psychometric propertie…
Specialist paediatric palliative care program development in the standard-of-care era Open Access
Objectives The number of Canadian children living with serious illness is increasing. Access to specialist paediatric palliative care is recognized as essential for these children, their families, and their care providers, and yet programs remain under-resourc…
Specialized pediatric palliative care in Italy: where are we going? The Palliped 2022-2023 study
Abstract
Background: The PalliPed project is a nationwide, observational, cross-sectional study designed with the aim of providing a constantly updated national database for the census and monitoring of specialized pediatric palliative care (PPC) activities in…
Spiritual Communication Between Pediatric Oncologists, Caregivers, and Patients With Brain Tumors
Background: Spiritual care is recognized as an essential component of standard care for children with cancer and their families. Oncologists lack training in navigating spirituality discussions in primary cancer care. The current landscape of spiritual dialog …
Spirituality in children with life-limiting, life-threatening and/or complex chronic conditions: A scoping review
Purpose: To map available knowledge about spirituality in children with life-limiting, life-threatening and/or complex chronic conditions.
Methods: This review followed the Joanna Briggs Institute methodology for scoping reviews. Registration was done with th…
Spiritual needs of adolescents with cancer: a systematic review and meta-synthesis
Background
Spirituality is an important component of palliative care, yet research focusing on adolescents remains in its early stages, with few studies addressing the spiritual needs of this group. The study aimed to integrate the spiritual needs of adolescen…
Stakeholder's Perspectives on the Barriers and Facilitators of Childhood Cancer Care in India
Objective: To explore the stakeholders' perspectives on barriers and facilitators influencing childhood cancer care delivery in India.
Methods: A nationwide survey was conducted across 26 states and 4 Union Territories, involving childhood cancer physicians f…
Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration
Background
Use of patient reported outcome measures (PROMs) are crucial to providing patient-centered care. In 2022, the Pediatric Palliative Improvement Network developed a project to standardize the assessment of patient experiences with PPC services.
Measur…
Strategies and Tools Used by Pediatric Nurses and Nurse Practitioners in Guiding Families From Curative to Comfort Care
Background/introduction: The timeframe from delivery of critical care and the transition to comfort care for the dying child can occur over minutes, days, weeks, or months. During this transition from curative to comfort care, nurses can play an active role in…
Study of Complementary and Integrative Interventions in Pediatric Patients With Serious Illness
Context: Pediatric patients report using complementary and integrative health interventions (CHI) for symptom management.
Objective: Feasibility and initial effect sizes of CHI with patients at two children's hospitals.
Methods: Using convenience sampling at…
Styles of Delivering News About a Child's Cancer and Parents' PTSD Symptoms
Background: Receiving a child's cancer diagnosis is a highly traumatic experience for parents, often leading to significant psychological distress, including symptoms of Post-Traumatic Stress Disorder (PTSD). The way healthcare professionals deliver this news …