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 1051–1075 of 4332 publications
Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families
CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC…
Parental factors affecting their participation in decision-making for neonates with life-threatening conditions: A qualitative study Parents' participation in decision-making
Background: Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors affecting paren…
Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale
The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life. With a sample…
Parental quality of life as an outcome of specialised paediatric palliative care: results of the SPhAERA study
Background: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs …
Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls
PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an inte…
Parent and Provider Perspectives of Clinical Ooutcomes of Critically Ill Children
INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV). However, lit…
Parent-Clinician Communication and Prolonged Grief in Parents Whose Child Died from Cancer
CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death.
OBJECT…
Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18
Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and infant morta…
Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation.
BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described discharge educat…
Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit
Objective: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU).
Study design: Single-center cross-sectional survey of bereaved parents who experienced …
Parents' and healthcare professionals' experiences with the content of an individual care plan for pediatric palliative care: a mixed-method study
BACKGROUND: The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care or coordin…
Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study
Abstract
Background: Evidence to guide intrapartum care when an unborn baby has died is limited.
Aims: To explore parents' experiences of care during labour of an antepartum stillbirth.
Materials and methods: Semi-structured interviews with 18 bereaved paren…
Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn.
Methods: Audio-recorded face-to-face interviews were led and ana…
Parents, Grandparents and Siblings: A Pilot Psychological Intervention Study in Pediatric Palliative Care
Portugal has approximately 8,000 children with life-limiting conditions. A need to psychological support has been identified, so an innovative online intervention study for families was developed. The aim is to explore potential effects of three intervention p…
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited t…
Parents providing palliative care for children with cancer
Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim of this stu…
Parent Views on Parent & Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study
BACKGROUND: Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints., OBJECTIVES: To exp…
Partnering With Parents to Dismantle "Good-Death" Narratives
This Viewpoint dismantles the notion of a “good death” in pediatrics using quotes from bereaved parents and provides actionable alternatives to improve quality end-of-life care for dying children and their families.
Plain language summary
This Viewpoint disma…
Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review
Abstract
Background: Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.
Aim: Review the evidence on involving paren…
Pediatric End-of-Life Simulation Workshop to Clinical Care: Lasting Implications on Clinical Practice
BACKGROUND: Simulations are an important modality for practicing high-acuity, low-frequency events. We implemented a deliberate practice simulation-based workshop to improve pediatric end-of-life care skills (PECS) competence. PURPOSE: To understand pediatric …
Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital
The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC cli…
Pediatric palliative care in Brazil: reflections on end of life based on geographic mapping
INTRODUCTION: In Brazil, a country of continental dimensions, the lack of services in the different regions is a major barrier that prevents patients from accessing Pediatric Palliative Care (PPC). If accessing PPC is already challenging, end-of-life care for …
Pediatric Palliative Care of a Transgender Adolescent
A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navig…
Pediatric Palliative Care Simulation Improves Resident Learning Outcomes: an 11-Year Review
Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric palliative …