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 326–350 of 4332 publications
Worlds in the making: a posthuman experiment with time, development and disability
This paper draws on a posthuman epistemology to reimagine disability, impairment, and young people labeled-as-disabled as open-ended processes that move in and with the world to generate creative re-orderings of time, bodies, and care. Normative ideas about de…
“Yes if… No but…” : a qualitative study of pediatric palliative care professionals and collaborators’ perspectives on medical assistance in dying
Background
Medical assistance in dying (MAiD) is permitted for minors under specific conditions in the Netherlands, Belgium, and Colombia. In Canada, MAiD became available to eligible adults (18 years and older) under specific conditions as of 2016. Since then…
A call to action: the need to recognize the importance of sleep for children and adolescents in pediatric palliative care
Extract
A global call to action was recently proposed to recognize sleep health as a foundation of human health [1]. The importance of good sleep and the negative impact of sleep deficiency on physical and emotional well-being have been extensively established…
A Case Report in Pediatric Palliative Care: Beliefs of Rebirth
In Buddhism, preserving life at all costs is generally discouraged, and to prolong life without hope for cure or recovery stems from the sins of delusion and worldly attachment. When an infant's death is imminent, Buddhist parents often prioritize the child's …
A Comprehensive Study on Symptoms and Suffering at the End of Life in Children with Leukemia Cancer
This review looks at the signs and pain that children with leukemia endure throughout their final days of life. The aggressive nature of pediatric leukemia, a common form of childhood cancer, and the fragility of its sufferers create special obstacles for the …
Adaptation of Pediatric Palliative Care Groups to Metabolic Diseases: Beyond the Pathways
The Palliative Care (PC) aims to control suffering in the physical, psychological, spiritual and social spheres. The growing number of studies that emphasize the importance of PC in the field of Inborn Metabolic Diseases (IMD) reinforce the substantial frequen…
Addressing Racism in Pediatric Serious Illness: Insights for Clinical Care and Advocacy
Inequitable care across racial groups has been a reality throughout the history of modern medicine. These inequities extend to children living with serious illness and impact their experiences within the healthcare system as well as their health outcomes. Whil…
A Double-Edged Sword: How Clinical Context Shapes Clinicians' Perceptions of Parental Religion in Paediatric Critical Care
Aim: Critically ill children are often accompanied by parents expressing religious values. This study aimed to explore paediatric clinicians' perceptions of parental religious values in a diverse setting, to understand their influence on the caring relationshi…
Adult specialist palliative care services caring for children in the community: a scoping review
Background
Adult specialist palliative care professionals have played a key role in the care of children with palliative care needs in the community. However, there is little known on their perceived level of preparedness or training in providing children’s pa…
A Dutch clinical practice guideline for paediatric palliative care: a systematic review and recommendations on psychosocial care including preloss and bereavement care
Background: Children with life-threatening and life-limiting conditions and their families are confronted with many uncertainties, incremental losses, and difficult decisions. Attentiveness to psychosocial care, including psychological, social, and spiritual c…
Advance Care Planning Conversations in Pediatric Patients with Refractory Oncologic Disease
Advance care planning (ACP) involves longitudinal communication between the patient and physician to explore the patient's wishes and goals while relaying accurate diagnostic and prognostic information to support informed and shared medical decision-making. In…
Advancing paediatric cancer care in Jordan: a strategic 10-year roadmap
In this Review, we assess the current landscape of paediatric cancer care in Jordan, identifying crucial gaps, barriers, and challenges in delivering optimal paediatric cancer services, and propose targeted, actionable solutions. We outline a comprehensive 10-…
A Formal Needs Assessment in Palliative Care Clinic Development for Adolescent/Young Adults (AYAs) with Neuromuscular Disease
Background: Although medical advancements have prolonged survival in Duchenne muscular dystrophy (DMD), it remains a life-limiting diagnosis with numerous challenges. Palliative care is recommended for all patients with DMD, but there is no consensus on the re…
African Hospital-Based Paediatric Palliative Oncology Care Independent of Economic Indicators: An International Society of Paediatric Oncology (SIOP) Global Mapping Programme Survey
Background: Paediatric palliative care (PPC) is considered an essential component of the management of children and adolescents with cancer. The International Society of Paediatric Oncology Global Mapping Programme (SIOP GMP) surveyed hospital-based paediatric…
A global call to action for disability inclusion in health research
Despite bringing great strengths and facing substantial health inequities, disabled people remain underserved by health research; addressing this requires multi-level actions spanning all areas of research.
Allostatic Load Borne by Caregivers of Children with Serious Conditions: Acceptability of Self-Reported Data
Background: Stress due to a child's serious medical condition affects the entire family. The cumulative stress burden (allostatic load) has deleterious health and economic effects. Objective: Demonstrate adequate caregiver willingness to disclose health care u…
Alpha-2 agonists for refractory neurological symptoms in pediatric palliative care: a scoping review
Background: Children receiving palliative care often suffer from refractory neurological symptoms. In recent years, there has been a growing interest in the use of alpha-2 agonists as a second- or third-line therapy for severe dystonia and irritability.
Objec…
Ambiguous Loss: Implications for Perinatal and Neonatal Nurses
Abstract
Death and grieving are regular events in the human lifecycle, and the rituals associated with the loss bring closure to dear ones. Ambiguous loss, a term coined by Pauline Boss, is a state in which there is no actual "death" and, therefore, no "grievi…
A mixed methods exploration of the health and caregiving experiences of fathers of children with a life-limiting condition
Background:
Fathers of children with a life-limiting condition are underrepresented in the literature. We know little about their experiences of caregiving, the impact of this on their health and their support needs.
Aim:
To explore the health and caregiving e…
An 8-Week Community-Based Resilience Group Intervention for Chinese Parents Who Lost Their Only Child: A Two-Armed Pragmatic Waitlist-Control Trial
Objective: This study developed and evaluated a structured, 8-week community-based resilience group intervention for Chinese parents who have lost their only child and exhibit extended bereavement and suboptimal levels of resilience.
Method: Eighty parents we…
Analysis of the surprise question as a tool for predicting death in neonates
The Surprise Question "Would you be surprised if the patient died in the next 12 months?" lacks pediatric research, particularly in neonatal patients. Our study aims to analyze the Surprise Question's predictive ability in neonates and explore pediatricians' v…
Analyzing the nexus between burnout and psychological distress in pediatric oncology nurses: a descriptive correlational investigation
Background: Burnout and psychological distress are significant concerns among healthcare professionals, particularly pediatric oncology nurses, who face emotional and physical challenges due to their demanding roles. Continuous exposure to life-threatening ill…
A network analysis of timing and conditions present at time of death for periviable infants (22+0-23+6 weeks) admitted to neonatal intensive care after receiving survival-focused care at birth
Introduction: Advances in neonatal care have resulted in improved survival rates for periviable infants (22 + 0–23 + 6 weeks) with increasing numbers being admitted to neonatal intensive care units across the United Kingdom. Qualitative research evidences the …
A new palliative and pain educational model for pediatric residents
Background: In Europe, resident doctors are not provided with standardized educational modules on pain management (PM) and pediatric palliative care (PPC).
Methods: Italian Schools of Residency in Pediatrics (ISRP) were invited to participate in an education …