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 276–300 of 4332 publications
Surrogate Trauma in Nurses Providing Pediatric Palliative Care: A Phenomenological Study
The aim of this study was to deeply examine the experiences of proxy grief among nurses providing pediatric palliative care. This qualitative phenomenological study was conducted with 16 nurses working in the pediatric ward of a hospital located in the norther…
Swedish Intensive Care Physicians' Attitudes Towards Withholding or Withdrawing Life-Sustaining Treatment in Critically Ill Children
Background: Decisions to withhold or withdraw life-sustaining treatments for critically ill children are challenging. This study aims to identify Swedish intensivists' attitudes, values and experiences towards the decision-making process concerning withholding…
Symptom management: how can specialist paediatric palliative care teams help?
Key points
While pain is relatively common in children who are life-limited or life-threatened, they may present with a wide range of symptoms including agitation/distress, dystonia, sleep problems, feed-related problems, gastrointestinal symptoms and breathle…
Systems Theory Model to Understand the Barriers and Facilitators to Palliative Care Referral for Pediatric Oncology Patients in Canada
PURPOSE: To explore pediatric oncology and palliative care health care providers' perspectives on the barriers and facilitators to pediatric palliative care (PPC) referral for children with cancer in Canada using a qualitative approach to inquiry.
METHOD(S): S…
Tailoring support for parents of children in palliative care: Feasibility of the carer support needs assessment tool intervention paediatric in a Norwegian context
Background: Parents of children receiving palliative care often experience significant caregiving responsibilities and unmet support needs, emphasising the importance of systematic assessments and tailored interventions. Objectives: This study examined the fea…
Taiwanese fathers' experiences following the death of a child to cancer
This study descried the experiences of fathers who had lost a child to cancer. The participants were eight fathers whose children died following cancer treatment. Semi-structured interviews were conducted, and content analysis identified six major themes: (1) …
Tele-advocacy and Bioethics During the Pandemic: A Telehealth Approach in Perinatal-neonatal Care for Mitigating Ethical and Moral Tensions at a Safety-net Hospital
Our neonatal intensive care unit (NICU) serves an underprivileged population in a resource-restricted environment. The recent COVID-19 pandemic and rapidly changing institutional protocols accentuated the challenges of caring for critically ill newborns. Concu…
Telling is Caring: Prioritizing the Best Interests of Dying Children
In contexts where children face imminent death despite ongoing medical care, a significant ethical question arises: should they be informed of their approaching death? Although international guidelines now advocate for honest and developmentally appropriate co…
Terminal lucidity in children: A contemporary case collection
The unanticipated occurrence of unusually enhanced mental clarity just before death has been reported across time and cultures and has come to be known by the term “terminal lucidity.” Cases that appear to be characteristic of terminal lucidity in children hav…
Te Whare Kaiao-an Indigenous-informed paediatric palliative care framework for Aotearoa New Zealand
Aim: This paper describes the development of an Indigenous-informed paediatric palliative care framework for Aotearoa New Zealand. Te Whare Kaiao (the living whare) builds upon the foundational framework of Te Whare Tapa Whā, recognising the core components in…
The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of death
Paediatric controlled donation after circulatory determination of death (pcDCDD) is a well described pathway for deceased organ donation, but there has been wide variability in global uptake. There are substantial and differing barriers to pcDCDD across countr…
The Do‐Not‐Resuscitate Order for Children With Terminal Cancer Admitted to a Palliative Care Unit
Introduction: Research on do‐not‐resuscitate (DNR) orders mainly focuses on adult patients, with only a few studies investigating children. We aimed to investigate the use of DNR orders and factors associated with the signing of a DNR order among children with…
The effect of an educational intervention for caregivers of children receiving palliative care: A quasi-experimental study
Purpose
The study examined the impact of an educational intervention delivered to caregivers of children receiving palliative care.
Design and methods
This study was designed as a quasi-experimental single-group pretest-posttest study. The study was conducted …
The Effect of Perspective, Duration, and Views on Death on the Valuation of Severe Health States
Objectives: Composite time trade-off utilities typically vary by perspective: adults tend to assign lower utilities to health states for themselves (self-perspective) than for children (proxy-perspective). Utilities also differ between proxy-perspectives: i.e.…
The End-of-Life Wishes and Preferences of Adolescents with Cancer: A Scoping Review
There is a lack of qualitative and systematic literature exploring the wishes and preferences of adolescents with cancer and their connection to identity and emotional well-being. This scoping review aimed to identify and synthesize existing studies on the end…
The experiences of nursing and midwifery students with end-of-life care in Neonatal Intensive Care Units: A qualitative descriptive exploratory study
Background: Research on nursing and midwifery students' experiences with end-of-life care in Neonatal Intensive Care Units (NICUs) is limited, indicating the need for deeper exploration. Understanding their experiences and educational needs may inform curricul…
The Experiences of Primary Caregivers of Children Receiving Palliative Care: A Qualitative Study
Grief and bereavement support are essential for patients and family members facing serious illness and the end of life. In total, 126 participants attended a 2-day palliative care training for oncology, the End-of-Life Nursing Education Consortium Oncology adv…
The Family Talk Intervention Improves Family Communication and Psychosocial Health Among Families in Pediatric Palliative Care: A Pre-Post Evaluation Study
Background: The psychosocial needs of families involving a child with a life-limiting or life-threatening condition are well recognized. However, evidence-based interventions that address the needs of the entire family remain scarce, even though family health …
The First 13 Years of "Percorso Giacomo": Patients' Outcomes
Objectives: To report the outcomes of a population of fetuses and neonates with life-limiting (LL) or life-threatening (LT) diagnoses leading to adverse prognoses cared for by a service of perinatal palliative care (PPC), the Percorso Giacomo (PG). Study desig…
The global need for paediatric palliative care: the evolution of serious health-related suffering in children aged 0-19 years from 1990 to 2023
Background
The majority of children needing palliative care globally reside in low-income and middle-income countries (LMICs) with limited or no access to such care, resulting in an excess burden of suffering. We aimed to estimate the global burden of serious …
The impact of sleep disorders of children with severe medical complexity on their caregivers' sleep: a perspective from two pediatric palliative care centers
Purpose
This study aimed to investigate sleep patterns in children with severe medical complexity (CMC) eligible for pediatric palliative care (PPC) and to evaluate the specific impact of these patterns on their caregivers’ sleep quality and quantity.
Methods…
“Their suffering also plagues us”: a narrative ethnographic exploration of humanitarian healthcare workers’ moral experiences of providing pediatric palliative care in Cox’s Bazar, Bangladesh
This focused ethnography was conducted between March-August 2021 at the Médecins Sans Frontières (MSF) Goyalmara Mother–Child Hospital in Cox’s Bazar, Bangladesh, which serves the Rohingya refugee and Bangladeshi host community. Data collection involved partic…
The Landscape of Hospice Care for Children in a Midwestern State
Background: Although limitations in access to pediatric hospice care have been previously documented, factors have not been directly assessed at the level of individual agencies. This study seeks to better define the current state of pediatric hospice care in …
The lived experiences of paediatric intensive care unit nurses during the initiation of long-term ventilation
Background
There is an increasing population of children who are surviving with chronic critical illnesses, some of whom are dependent on technology to sustain life. Long-term ventilation (LTV) is frequently initiated in the paediatric intensive care unit (PIC…