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 2626–2650 of 4332 publications
Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and wo…
Nutritional survey in critically ill children: a single center study in China
BACKGROUND: The incidence of malnutrition in children, who were admitted to the pediatric intensive care unit (PICU), has kept high level over the past 30 years. In addition, nutrition status of critically ill children deteriorates further during the changing …
Off-Label and Unlicensed Drugs in Pediatric Palliative Care: A Prospective Observational Study
Context: Off-label and unlicensed use of drugs is a widespread practice in pediatric care because of the lack of specific efficacy and safety data and the absence of formulations adapted to the needs of these individuals. Pediatric patients with a life-limitin…
Oral and dental considerations in pediatric cancers
Oral health care is an integral component of interprofessional collaborative care for children and adolescents diagnosed with cancer. The current review highlights the phases of cancer therapy when dental interventions and palliative care are necessary for chi…
Outcomes of preterm infants born with marginal viability in a University Hospital in Thailand
AIM: Reports of the outcomes of infants born with marginal viability in developing countries are limited. This study aimed to determine the mortality rate and major disabilities of extremely preterm infants. METHODS: A retrospective cohort with a prospective p…
Outpatient liaison palliative care for children: Two Years' Experience of Non-profit Charitable Organization
The system of palliative medical care for children in Russia has been actively developing in recent years. It is important to discuss the principles of outpatient palliative care organization in different regions of the country. The experience of creation and …
Paediatric health care access in community health centres is associated with survival for critically ill children who undergo inter-facility transport: A province-wide observational study
BACKGROUND: Diverse settlement makes inter-facility transport of critically ill children a necessary part of regionalized health care. There are few studies of outcomes and health care services use of this growing population. METHODS: A retrospective study eva…
Paediatric oncology providers' perspectives on early integration of paediatric palliative care
BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliati…
Pain Squad+ smartphone app to support real-time pain treatment for adolescents with cancer: protocol for a randomised controlled trial
INTRODUCTION: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses …
Palliative and end of life care for a child: understanding parents' coping strategies
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework…
Palliative care?! But this child's not dying: The burgeoning partnership between pediatric cardiology and palliative care
The field of pediatric cardiology has witnessed major changes over the past few decades that have considerably altered patient outcomes, including decreasing mortality rates for many previously untreatable conditions. Despite this, some pediatric cardiology pr…
Palliative care considerations and practices for adolescents and young adults with cancer
The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even mor…
Palliative Care Engagement for Pediatric Ventricular Assist Device Patients: A Single-Center Experience
Outcomes in pediatric patients with ventricular assist devices (VADs) for advanced heart failure (HF) are improving, but the risk of associated morbidity and mortality remains substantial. Few data exist on the involvement of pediatric palliative care (PPC) in…
Palliative care for pediatric intensive care patients and families
PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing …
Palliative care in 9 children with neurodegeneration with brain iron accumulation
Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents.
Material and methods: The children were treated at home by a multidisciplinary team. Densitomet…
Palliative Care in Children With Heart Disease Treated in an ICU
OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DE…
Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports
Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative managem…
Palliative care in the neonatal intensive care unit
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that pro…
Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children
There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children w…
Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to…
Palliative care utilization in hospitalized children with cancer
Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of …
Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional ther…
Parental coping with childhood cancer and its relationship with self-construal: A survey in southeast Iran
Background: Childhood cancer is a major challenge for parapets. Parents are one of the main sources of emotional support for their child, but their ability to provide proper care during their child's illness and treatment depends entirely on the way they manag…
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to …
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast…