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 651–675 of 4332 publications
Perinatal Bereavement Photography: A Mixed-Methods Study on Posttraumatic Growth in Parents
Perinatal death is a devastating loss for parents, often exacerbated by the lack of social support. There is accumulating evidence that perinatal bereavement photography is a valuable memory-making tool to support parents experiencing perinatal loss. However, …
Perinatal palliative care in Poland: current legal status, organization, standards and guidelines
The term “perinatal hospice” as a form of targeted care for pregnant women and their families in cases of diagnosed lethal fetal anomalies first appeared in the medical literature in 1997. The terminology regarding care for families expecting the birth of a si…
Photography and perinatal loss: parents' experiences of memory-making and meaning
BACKGROUND: Existing literature acknowledges photography's potential as a supportive psychosocial intervention for parents experiencing perinatal loss. However, empirical research that centres bereaved parents' lived experiences remains limited. METHODS: To ex…
Physicians' Perspectives and Attitudes Toward Palliative Care for Cancer Children in mainland China
Context
Integrating pediatric palliative care (PPC) into the routine care of children with cancer improves outcomes for children and their families.
Objectives
Understanding physician perceptions of PPC in mainland China is crucial for enhancing PPC services.
…
Piloting the first pediatric-specific serious illness conversation program training at Baylor Scott & White
Background: The need for advanced care planning in pediatrics is becoming more recognized as children live longer with chronic illnesses. In April 2023, the first cohort of pediatric residents in the Baylor Scott & White system underwent Serious Illness Conver…
Policy and care in tandem: structuring youth volunteerism for psychological benefits in pediatric palliative care
Terminally ill children (TIC) in pediatric palliative care often encounter psychological deprivation due to isolation, impacting their self-discovery and identity formation. The Young Pioneer Voluntary Teams (YPVTs), initiated by the Ministry of Education of C…
Polypharmacy in Pediatric Palliative Care: Exploring Discrepancies Between Physicians and Pharmacists
Background/Objectives: Off-label drug use is prevalent in pediatric care, particularly in pediatric palliative care (PPC), due to the scarcity of pediatric-specific formulations and clinical trials. Differences in perception between healthcare professionals re…
Positioning comfort measures in antenatal counselling for periviable infants
Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable inf…
Posttraumatic Growth and Continued Bonds in Fathers Receiving Bereavement Photography Following Perinatal Loss: A Mixed-Methods Study
Research exploring fathers' experiences of using bereavement photography after perinatal loss is lacking. Using continuing bonds theory, this study aims to investigate fathers'experiences of bereavement photography and predictors of posttraumatic growth (PTG).…
Post-traumatic Growth in the Link with Resilience, Self-compassion, and the Personal and Clinical Characteristics in Adolescents with Life-threatening Disease: A Cross-sectional Correlational Study
Background: Post-traumatic growth (PTG) is a significant factor influencing health outcomes. This research aims to determine the status of PTG and its correlation with resilience, self-compassion (SC) and personal and clinical characteristics in adolescents wi…
Practice of pediatric palliative extubation in Brazil: a case series
Objective: To describe the clinical profile, procedures applied and outcomes of patients undergoing palliative extubation in the pediatric intensive care unit at a high-complexity teaching hospital in the northeastern region of Brazil.
Methods: This is a desc…
Predicting the Need for Palliative and Hospice Care for Children in Ukraine Using the Moving Average Trend Method
Palliative and hospice care (PHC) is provided to patients with life-limiting conditions during the terminal phase of illness, typically in the final weeks of life. Globally, an estimated 56.8 million individuals require such care annually, of whom 25.7 million…
Prediction of peri-operative mortality in care of preterm children in non-cardiac surgery
Background: The aim of this study was to develop a risk calculation model for peri-operative 30-day-mortality in preterm infants in non-cardiac surgery.
Methods: Retrospective monocentric follow-up cohort-study of 27,453 pediatric anesthesias at a German univ…
Preferences for Communication About Prognosis Among Children With Cancer, Parents, and Oncologists
Key Points: Question: Should oncologists elicit communication preferences from patients with pediatric cancer and their parents before disclosing prognosis? Findings: In this qualitative study involving 85 participants (25 patients, 40 parents, and 20 oncologi…
Preferred and Actual Location of Death in Adolescents and Young Adults With Cancer
Importance: Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse.
Objective: To evaluate the extent of concordan…
Preparing for a Child's End of Life: Parent Perspectives
Objective: Feeling prepared for a child's end of life (EOL) may help to alleviate parents' psychological symptoms following their child's death from cancer. However, most parents report feeling unprepared, and data on how parents define feeling prepared for th…
Priorities for research in perinatal palliative care: an international Delphi study
Background: Perinatal palliative care (PPC) addresses the complex needs of families facing life-limiting fetal or neonatal conditions through an interdisciplinary, family-centered approach. Despite growing recognition of its importance, there is a lack of syst…
Project Baby Panther -assessment of the implementation of the rapid Whole Genome Sequencing as routine diagnostic toll for critically ill neonates and children in Austria
Background: In critically ill neonates and children, accurate and timely diagnosis is needed to enable targeted treatments, decisions on palliative care and to avoid unnecessary invasive procedures. Exome analysis has become the indispensable diagnostic gold s…
Protection of children's rights to access palliative medical services: Legal problems
Objective: Aim: To identify legal issues in protecting children's rights to palliative care in Ukraine, to propose basic guarantees of their rights, and to note trends in foreign practice.
Patients and methods: Materials and Methods: The study is based on its…
Provider Perspectives on Palliative and Complex Care Team Collaboration
Context
Pediatric palliative care and complex care programs frequently collaborate when caring for a shared population of children with medical complexity (CMC), despite programmatic heterogeneity across institutions. Yet, scant literature exists documenting t…
Psychological Domains of Care of Pediatric Palliative Care Within Pediatric Oncology
Objective: A childhood cancer diagnosis can have serious psychological impact on patients and families. While psychological and psychiatric providers bring unique expertise, they are not routinely integrated into pediatric palliative care (PPC) teams. This stu…
Racial Inequalities in Pediatric Hospice Care
Racial disparities within palliative care related to both quality of care and access to care are well-documented across inpatient, outpatient, and home-based settings, including in pediatrics. There has been a call to action to examine these ongoing inequities…
Raising Awareness: Real World Data On Palliative Care for Advanced Pediatric Cancers in Bavaria
Introduction: Early integration of palliative care in children with cancer provides a variety of positive effects and is recommended at diagnosis. However, barriers often delay its implementation, and palliative care remains underutilized. This study provides …
Realities of Home Care System for Children with Medical Complexity (CMC): A Qualitative Study of Parent Perspectives Experiences, Barriers, and Alternative Models
Background: Children with medical complexity (CMC) need coordinated home care beyond traditional healthcare, and how parents interact with these systems is central to shaping their children's care pathways. While family-centered care emphasizes collaboration b…
Recommendations for Improving Equitability of Care for Pediatric Oncology
Objectives: There is a severe economic crisis in Lebanon that has significantly impacted its healthcare system, particularly pediatric oncology. With a high cancer incidence rate and increasing pediatric cancer burden, it remains inequitable to access speciali…