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 4301–4325 of 4332 publications
‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth
This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After coming to…
Decisions around long-term ventilation for children: Perspectives of directors of pediatric home ventilation programs
Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guid…
Prolonged Grief, Autobiographical Memory, and Its Interaction With Value Orientations in China and Switzerland
As a psychopathological function of prolonged grief (PG) disorder, disruptions in autobiographical memory have been shown in bereaved individuals in terms of preferred access of loss-related memory and reduced specificity in non-loss-related memory. The presen…
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Abstract
Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 duri…
Nurses' experiences of spiritual communication with seriously III children
Objective: The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area. Background: Although spiritual care is essential in pediatric palliative care, few providers rec…
Who Will Speak for Me? Disparities in Palliative Care Research with "unbefriended" Adolescents Living with HIV/AIDS
Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six ped…
Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families
BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication…
An Intuitive Approach to Understanding Infant Death
The sudden, unexpected, and unexplained death of a healthy infant in its first year of life (nominally 2 to12 months) is surely one of the most tragic human experiences a parent can undergo. The shock of loss is commonly accompanied by extreme sorrow, grief, f…
Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to…
Transforming the Pediatric Experience: The Story of Child Life
During the past century, child life programming has evolved into a standard of care for children experiencing life's most challenging events.
A Review of Parental Bereavement Interventions: Implications for Clinical
The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This traumatic f…
Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Abstract
Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking.
Purpose: This survey study evaluates …
Future roles of artificial intelligence in early pain management of newborns
The advent of increasingly sophisticated medical technology, surgical interventions, and supportive healthcare measures is raising survival probabilities for babies born premature and/or with life-threatening health conditions. In the United States, this trend…
Gender Differences in Depressive Symptoms Following Child Death in Later
Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers.
Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectorie…
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents ar…
Palliative care education in an Australian undergraduate pharmacy curriculum: an exploratory descriptive study
Abstract
Objectives
To examine the self-perceived knowledge, confidence and preparedness of undergraduate pharmacy students to provide palliative care.
Methods
A descriptive exploratory analysis was conducted in 2021 at an Australian university involving fina…
Palliative care in the neonatal intensive care unit: An Indian
The survival of newborn babies born with various problems has improved
Palliative Sedation Therapy Practice Comparison – A Survey of Pediatric Palliative Care and Pain Management Specialists
Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations …