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 4026–4050 of 4332 publications
Listening to parents: The role of symptom perception in pediatric palliative home care
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be …
Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study
BACKGROUND: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. AIM: To provide an in-depth exploration of the prevalent lived experiences of pare…
Living with Dying in the Pediatric Intensive Care Unit: A Nursing Perspective
BACKGROUND: Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive car…
Long length of hospital stay in children with medical complexity
Background: Hospitalizations of children with medical complexity (CMC) account for one-half of hospital days in children, with lengths of stays (LOS) that are typically longer than those for children without medical complexity. The objective was to assess the …
Maternal Employment, Work Experiences, and Financial Well-Being of Australian Mothers Who Care for Young Children With Special Health Care Needs
The employment and work experiences of mothers who care for young children with special health care needs is the focus of this study. It addresses a gap in the research literature, by providing an understanding of how mothers? caring role may affect employment…
Measuring and communicating meaningful outcomes in neonatology: A family perspective
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether a…
Mechanical ventilation in children with life-limiting conditions
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim was to revi…
Methadone conversion in infants and children: Retrospective cohort study of 199 pediatric inpatients
OBJECTIVE: Methadone administration has increased in pediatric clinical settings. This review is an attempt to ascertain an equianalgesic dose ratio for methadone in the pediatric population using standard adult dose conversion guidelines. SETTING: US tertiary…
Metronomic therapy can increase quality of life during paediatric palliative cancer care, but careful patient selection is essential
AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with various ref…
Modelling Neonatal Care Pathways for Babies Born Preterm: An Application of Multistate Modelling
Modelling length of stay in neonatal care is vital to inform service planning and the counselling of parents. Preterm babies, at the highest risk of mortality, can have long stays in neonatal care and require high resource use. Previous work has incorporated b…
More than medication: perinatal palliative care
In this edition, Garbi et al. present a case for what they refer to as ‘Delivery Room Hospice’ by reporting an illustrative periviable 23-week-gestation infant whose mother reports angst in watching her struggle to breathe. The authors suggest a tension betwee…
Mortality in Dravet syndrome
We measured the mortality rate and the rate of Sudden Unexpected Death in Epilepsy (SUDEP) in Dravet Syndrome (DS). We studied a cohort of 100 consecutively recruited, unrelated patients with DS; 87 had SCN1A mutations. Living cases had a median follow-up of 1…
Multi-disciplinary pediatric end-of-life training improves staff preparedness and lessens staff distress
Background: Children's hospital professionals generally receive standardized training in Pediatric Advanced Life Support (PALS) but they are not regularly trained in the provision of end-of-life care in situations where death is anticipated. To address this tr…
Nasogastric tube feeding in children with cancer as a part of palliative care
Background/Objectives: Many paediatric oncology patients lose weight because of their inability to consume adequate caloric intake orally. Poor nutrition is associated with malnutrition and poor prognosis of the disease. Thus nutritional support is an importan…
Neonatal Death in the Emergency Department: When End-of-Life Care Is Needed at the Beginning of Life
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these efforts, hundred…
Neonatal deaths: Prospective exploration of the causes and process of end-of-life decisions
Objective: To determine the causes and process of death in neonates in Canada. Design: Prospective observational study. Setting: Nineteen tertiary level neonatal units in Canada. Participants: 942 neonatal deaths (215 full-term and 727 preterm). Exposure and o…
Neonatal end of life care in a tertiary care centre in Canada: a brief report
OBJECTIVE: To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to describe feedback from these parents after death of their child.
METHOD…
Neonatal palliative care-Alice's journey
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for th…
Neonatal palliative care: A quality improvement project
Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs. Aims * Identify and describe…
Neuro inhibitory techniques for paediatric oncology patients in hospice-decreased cancer related fatigue and improved quality of llfe (QOL)
Background: High levels of fatigue and decreased physical functioning have been reported in Pediatric palliative oncology patients. Neuro rehabilitation with neuro inhibitory techniques can be incorporated to inhibit excitatory patterns and decrease fatigue in…