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 1501–1525 of 4332 publications
The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative h…
The experience of families in face of the finiteness of their children in the process of adopting palliative care
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended palliative…
The Experience of Parental Caregiving for Children With Medical Complexity
Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a t…
The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy.
Objectives: Using a meta-ethnographic approach, we systematically reviewed the literat…
The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing …
“The gender gap in caring for children with medical complexity”
"The following is an unfortunate but common scenario: a baby born extremely premature who needs a tracheostomy for long-term ventilatory support might have no home nursing available in her area, regardless of insurance status, and might wait months for a rehab…
The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas
BACKGROUND: Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high-grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However, studies con…
The Impact of End-of-Life Care Among Nurses Working in the Pediatric Intensive Care Unit
Health care providers caring for patients at the end of life (EOL) are faced with a multitude of emotions such as guilt, anger, sadness, and helplessness. Because of the negative impact of initiating EOL care (EOLC) to the pediatric population, organizations m…
"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding …
The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
Abstract
Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate…
The meaning of dying and death for children, their carers, and families: a scoping review
Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life.
Methods: A scoping review of the intern…
"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic emotional lab…
The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Published data collected in hospital during the last year of life of children with life-limiting complex chronic conditions (CCC) is scarce, yet critical, for the implementation of paediatric palliative care (PPC). This study aims to describe the last year of …
The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may mak…
The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes
Background and objectives: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient…
The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implemen…
The physical and psychological outcomes of art therapy in pediatric palliative care: A systematic review
BACKGROUND: The integration of art therapy in health care is a growing trend in the care of cancer patients. Therefore, this study aimed to identify the physical and mental benefits of art in children with cancer. MATERIALS AND METHODS: A systematic review of …
The Power and Potential of Photography as a Therapeutic Modality for Children with Life-Impacting Illnesses
Objectives: Art is being increasingly appreciated for its healing capacity in pediatric medicine. However, while mediums like music and painting have already been widely integrated into children's health institutions across the nation, photography is an artfor…
The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)
Outcomes:
1. Describe the evidence-based benefits of serious illness conversations
2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program
Background
Early ped…
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for chi…
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship …
The Role of Pediatric Palliative Care Following Nonaccidental Trauma
All children experiencing child maltreatment/neglect require child abuse experts to offer the complex care needed, and for the child with potential life-limiting injuries, both child abuse and palliative care experts are integral to the team. The current liter…
The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief.…
The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, wh…