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 476–500 of 4332 publications
FACTORS ASSOCIATED WITH PEDIATRIC ORGAN DONATION AFTER DEATH BY NEUROLOGIC CRITERIA
INTRODUCTION: Evaluation for death by neurologic criteria (DNC) may help inform family decisions around end of life care and organ donation in pediatric patients with severe neurologic injury. Knowledge is limited on which children who undergo DNC testing proc…
Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis
BACKGROUND: Many high-income countries are seeking to adapt services to meet the needs of the growing population of children with medical complexity and their families but concerns have been raised about the quality of this care. To understand family caregiver…
Family Functioning and the Quality of Life of Children with Cancer: A Descriptive Cross-Sectional Study
Background:In the past decade, significant advances have been made in the field of pediatric cancer treatment, leading to increased survival rates among these patients. This increase in survival has resulted in changes in the quality of life (QOL) and family f…
Family Involvement in Learning From Expected Child Deaths: A Qualitative Study of UK Parents
Background: Bereaved parents often have questions about their child's illness and care even when the cause was established prior to death. Child Death Review (CDR) seeks to understand the full reasons for each child's death to help improve care. In the United …
Family perspectives and experiences on implementing telehealth in pediatric palliative care: a qualitative approach
Telehealth is seen as a promising avenue to improve accessibility and quality of pediatric palliative care (PPC) yet engaging users with digital tools (DT) over the long term poses a challenge. Aligning telehealth initiatives with the actual needs and expectat…
Fathering a Child With a Progressive Life-Limiting Condition in the Context of Pediatric Palliative Care: A Qualitative Interview Study
Fathers report feeling sidelined and being treated as secondary parents in healthcare settings. Despite their vital caregiving contributions, fathers remain underrepresented in pediatric palliative care research, particularly outside oncological contexts. This…
Fathers’ relational experiences of stillbirth: Pre-natal attachment, loss and continuing bonds through use of objects
This study aimed to investigate fathers’ lived experiences of stillbirth through the lens of continuing bonds and use of objects. Semi-structured interviews were conducted with six fathers who had experienced stillbirth from 20 weeks gestation. Interpretative …
Feasibility, Acceptability, and Effectiveness of Adding an Evidence-Based Parent/Caregiver Program for Bereaved Families to Usual Community-Based Services
This paper briefly describes the development of the Resilient Parenting for Bereaved Families program (RPBF) and presents an evaluation of adding the RPBF to usual care (UC) provided by community agencies supporting families of bereaved children. The RPBF was …
Feasibility, acceptability and potential efficacy of the pediatric family-based dignity therapy for children with advanced cancer: A pilot study
Objective Pediatric family based dignity therapy (P-FBDT) is an individualized psychotherapy in palliative care, with untested feasibility, acceptability, and efficacy. This study aims to assess its feasibility, acceptability, and potential efficacy among chil…
Feasibility and acceptability of a digital storytelling intervention for children with serious illness
Background The need for home-based palliative care is significant for the growing population of children with serious, advanced conditions, yet interventions offered in home settings remain limited. Access disparities, especially for rural families, further ma…
Forming our grief rhythm: The relational window of tolerance for bereaved parents
The shared loss of a child can present challenges to couple relationships as both partners attempt to cope with their own grief and their partner's grief. In this longitudinal qualitative study, five bereaved parent couples participated in 13 total interviews,…
From compassion to action: perinatal palliative care at the Bonifratres Medical Centre (2014-2023) - part one
Objectives: In recent years, advances in prenatal diagnostics have enabled the identification of congenital abnormalities, including genetically determined disorders, at an early stage of fetal development. Diagnosing a lethal fetal anomaly affects the entire …
From mourning to memorialising - A lasting connection through remembrance: The role of memory making in preserving the identity of parenthood amongst women who have suffered a perinatal bereavement
Problem: Perinatal bereavement can severely disrupt women's anticipated role as mothers, affecting their psychological wellbeing and identity as parents.
Background: Existing research highlights many women report persistent and enduring grief for months or ev…
Futile therapy protocols: A 3-year review of the implementation of Polish guidelines on ineffective organ function maintenance in pediatric intensive care unit—A pilot study
Background and objectives: This study aimed to evaluate the implementation and impact of futile therapy (FT) protocols in pediatric intensive care units (PICUs) in Poland.
Methods: A retrospective analysis 48 futile therapy protocols signed at three academic …
Geography and age drive racial and ethnic disparities in hospital mortality for paediatric community-acquired pneumonia in the United States: a retrospective population based cohort study of hospitalized patients
Background: Racial disparities in the outcomes of adult community-acquired pneumonia are well described. However, the presence of racial and ethnic disparities in paediatric community-acquired pneumonia and the mechanisms underlying these disparities remain un…
Goals of Care Discussion Characteristics and Disparities in Children With Medical Complexity
Objective: Children with medical complexity (CMC) have disproportionately high health care utilization and mortality. Goals of care (GOC) discussions improve goal concordance and subjective outcomes for CMC and their caregivers; however, little is known about …
Good practices for humanization in pediatric intensive care units: a national Delphi consensus study
Objectives To adapt and validate a good practice manual on humanisation, originally designed for adult critical care patients, to the paediatric intensive care unit (PICU) context. Methods A methodological study to adapt and validate a clinical practice manual…
Growing through experience: A phenomenological study of pediatric healthcare providers' experience of caring for terminally ill children in mainland China
Purpose
Caring for terminally ill children is highly demanding and emotionally challenging for healthcare providers. Understanding their experiences is crucial for identifying their needs, thereby providing appropriate support. However, limited research has ex…
Harnessing Social Media to Develop Conceptual Domains of Quality of Life for Adolescents With Advanced Cancer
Background: Many adolescents will not survive their cancer diagnosis and will live with advanced cancer (cancer i.e. difficult to cure). Due to the advancement of cancer therapies, many adolescents will live with advanced cancer for long periods of time. Enhan…
Healthcare Information Avoidance in the Context of Caring for a Child with a Serious Illness
Caregivers of a child with a serious medical condition are often confronted with difficult and stressful medical information. While they commonly seek out health-related information to better care for their child and help with their decision-making, sometimes …
Healthcare professionals' discussion of loss and grief with parents of children with life-limiting severe neurological impairment: Findings from a scoping review
Objectives: Parents' experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate illness-related …
Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study
Background: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite…
Health practitioners' perceptions of psychosocial support for siblings of children with poor prognosis cancers: a qualitative study
Purpose
Psychosocial support for siblings has been identified as a standard of care in pediatric oncology. The aim of this study was to explore health practitioners’ perspectives on how siblings of children with poor prognosis cancers are supported.
Methods
U…
Health Technologies and Infrastructures for Supporting Home-Based Pediatric Palliative Care: Scoping Review
Background:
Families with children who need pediatric palliative care (PPC) often stay at home to preserve a sense of normalcy. However, families may experience challenges regarding communication and follow-up from health care professionals (HCPs). Health tech…
Help us make a better flow in everyday life - family needs in home-based pediatric palliative care: a qualitative study
Background: Pediatric palliative care focuses on optimizing the quality of life for children with life-limiting or life-threatening conditions and their families. Home-based pediatric palliative care is often recommended as the preferred model of care. To ensu…