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 3201–3225 of 4332 publications
Dyspnea in Children with Life-Threatening and Life-Limiting Complex Chronic Conditions
BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: …
Early Parental Loss and Intimate Relationships in Adulthood: A Nationwide Study
Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the forma…
Efficacy of adding interoceptive exposure to intensive interdisciplinary treatment for adolescents with chronic pain: A randomized controlled trial
Fear of pain plays an important role in the maintenance of chronic pain. It may be reduced through exposure therapy. This 2-arm parallel samples, randomized controlled trial aimed to investigate whether interoceptive exposure (IE) therapy enhances reductions i…
Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written…
Empathy and the Public Perception of Stillbirth and Memory Sharing: An Australian Case
Objective: Stillbirth devastates families and leaves them struggling to grieve the death of their baby in a society that expects grief symptoms to decrease over time. Previous research has suggested that increased memory sharing opportunities can lead to posit…
End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?
Background/Objectives: Although the majority of childhood cancers are curable, this is not yet true for low resource countries. In Uganda, cancer care is only done at the Uganda Cancer Institute. Between Jan 1st and Dec 31st, there were 4,321 new cancer cases …
End-of-life care of children with diffuse intrinsic pontine glioma
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care prov…
End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal…
End-of-life Decisions at Neonatal Intensive Care Units: Jordanian Nurses Attitudes and Viewpoints of Who, When, and How
PURPOSE: To explore factors predicting neonatal nurses' attitude towards end-of-life decisions in neonates, and to describe the nurses' viewpoints on end-of-life decisions; barriers to end-of-life decision making; parents', nurses', and ethical committees' inv…
End-of-Life Treatments in Pediatric Patients at a Government Tertiary Cancer Center in India
AIM:
The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India.
METHODS:
A retrospective review was undertaken of medical charts of all children younger …
End-of-life trends and patterns among children in the US foster care system:
Drawing on national, longitudinal Adoption and Foster Care Analysis and Reporting System data (2005-2015), demographic, health, foster care, and geographic characteristics of decedents (N = 3,653) aged 1-17 years were examined. On average, decedents were 6 yea…
Epidemiology of death in paediatric intensive care units (PICUS) in a developing country
Aims & Objectives: Decision making at end of life for children has been the most difficult experience for families and clinician. In depth study in this field is warranted to guide provision, funding and evaluation of palliative and bereavement care for both f…
Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, …
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
Background/Objectives: Ethical dilemmas commonly occur around life threatening illness and are a source of distress for families and medical providers. Unidad Nacional de Oncologia Pediatrica (UNOP) is a large Pediatric cancer center that treats over 500 new p…
Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation…
Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on the Intern…
Evaluating the impact of national education in pediatric palliative care: the Quality of Care Collaborative Australia
Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliat…
Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which involved a …
Evaluation of a staff well-being program in a pediatric oncology, hematology, and palliative care services group
Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to impr…
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This study evalu…
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or …
Evaluation of residents' level of comfort with palliative care concepts before and after
Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While Pediatric Advan…
Existential experience of children with cancer under palliative care
OBJECTIVE: To understand the existential experience of children with cancer under Palliative Care from the Humanistic Nursing Theory's point of view. METHOD: This is a field and qualitative research, in which eleven children participated, supported by the Supp…