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 3626–3650 of 4332 publications
Impact of caring for children with medical complexity on parents’ employment and time
Objectives: This study examined parental care of children with medical complexity (CMC) in terms of time spent providing care and impacts on employment and career. Methods: We recruited caregivers of 153 CMC in a tertiary center complex care program to partici…
Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaC…
Improving cancer care for children in the developing world: Challenges and strategies
Cancer is a global health problem particularly in developing countries where the burden of cancer is ever increasing and claiming the lives of about 100,000 children under the age of 15 years every year. Majority of these occur in the Low and Middle Income Cou…
Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care
Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The…
Independent non-medical prescribing in children's hospices in the UK: a practice snapshot
Background: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. Aim: To identify the context of non-medical prescribing in children's hospices in the UK, focusi…
Indicators for clinical activity in palliative care: The experience of a regional resources team of paediatric palliative care
Context. - The regional resource teams of pediatric palliative care, like any adult mobile palliative care team in France, have to realize an annual report including several indicators that are often imposed by the regional public health authorities. Our regio…
Influence of early phase clinical trial enrollment on patterns of end-of-life care for children with advanced cancer
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early phase cli…
Influence of exposure to perinatal risk factors and parental mental health related hospital admission on adolescent deliberate self-harm risk
Adolescent deliberate self-harm (DSH) has been found to be associated with a range of bio-psycho-social factors. Simultaneous investigations of these factors enable more robust estimation of the independent effect of a specific risk factor by adjusting for a m…
Interactive Palliative and End-of-Life Care Modules for Pediatric Residents
Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs)…
"I Will Communicate With You, But Let Me Be In Control": Understanding How Parents Manage Private Information About Their Chronically Ill Children
Parents have a significant role in the management of a child's chronic condition. Parents are often the only consistent individuals managing a child's health across his or her childhood and adolescence (e.g., present for all appointments and medical procedures…
'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative car…
Knowledge, comfort, and practice of palliative care by child neurologists
Objective: Child neurologists regularly care for patients with serious illness; however, most receive no formal training in basic palliative care skills. We aimed to improve child neurology providers' knowledge, comfort, and integrated practice of palliative c…
Late Effects of Treatment and Palliative Care
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity…
Licensing Surrogate Decision-Makers
As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-gro…
Liminality in Pediatric Palliative Care
Palliative care for infants, children, and adolescents encompasses numerous transitions and thresholds of uncertainty that challenge conventional clinical medicine. Palliative care clinicians have opportunities to be more comfortable amid such challenges, or p…
Losing Thomas & Ella: A Father's Story (A Research Comic)
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of anger, distance…
Maintaining family life balance while facing a child's imminent death-A mixed methods study
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have…
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four pra…
Maternal mourning: pain and coping with the loss of a baby
Objective: to understand how mothers experienced the experience of their babies' mourning. Methods: this is a qualitative study, conducted with nine mothers who experienced the loss of a child under one year. Semi-structured interviews were conducted, and the …