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 1326–1350 of 4332 publications
Fatal fetal anomaly: Experiences of women and their partners
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth semi-structured inte…
Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review …
Finding methods for the inclusion of all children: Advancing participatory research with children with disabilities
Abstract This method-focused article continues the discussion of how methodological challenges in research with children with disabilities can be overcome. By examining the difficulties in introducing walk-and-talk conversations in an ethnographic study with y…
“Fitting the Pieces Together”: The Experiences of Caregivers of Children With Medical Complexity
Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and activities. Currently, little is known about this experience from the perspectives of caregivers; the…
Gasping in Dying Children: Health Care Professionals' Feelings and Knowledge
Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488 HCPs (physic…
Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review
Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in ped…
Goal-Concordance in Children with Complex Chronic Conditions
Abstract
Objectives: To characterize delivery of goal-concordant end-of-life (EOL) care among children with complex chronic conditions and to determine factors associated with goal-concordance.
Study design: This was a retrospective review of goals of care di…
Goals of Care Among Parents of Children Receiving Palliative Care
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.
Objective(s)…
Grieving Parents' Meaning-Making Narration in Relation to Value Orientations: A Cross-Cultural Study
This study investigated the association between prolonged grief (PG) severity and meaning-making narration in a cross-cultural context, and specifically aimed to illustrate the role of value orientation in shaping the grieving process. 30 Chinese and 22 Swiss …
Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis
Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate sup…
Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents wi…
Home care needs of paediatric palliative patients perceived by professionals: A grounded theory
OBJECTIVE: To explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals. METHOD: Qualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical s…
Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation.
Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers…
Hospice Care in India-A Pediatrician's Perspective
Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric p…
Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.
Background: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures,…
Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care
BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the im…
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been re…
How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
Aim: The decrease in childhood mortality, the growing clinical complexity and the greater technification of intensive care units have changed the circumstances of death of paediatric patients. The aim of this study is to describe the context of death and end-o…
Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. O…
"I'm Afraid If This Goes Wrong… What Will Become of Me?": The Psychological Experience of Grandparents in Pediatric Palliative Care
Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their …
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) inco…
Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is nee…
Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study
BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are b…
Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit f…