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 4176–4200 of 4332 publications
The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden
BACKGROUND: To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of >/=8days was the trigger for …
The impact of a perinatal palliative care on length of stay, ICU days and invasive procedures
Objectives * Describe the history, epidemiology, and role of perinatal palliative care. * Examine the impact of perinatal palliative care on neonatal outcomes at the University of Minnesota. * Explore the potential benefits of perinatal palliative care for the…
The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real r…
The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS
OBJECTIVE: Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address thi…
'The nice thing about doctors is that you can sometimes get a day off school': an action research study to bring lived experiences from children, parents and hospice staff into medical students' preparation for practice
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and …
The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is i…
The provision of family-centred intensive care bereavement support in Australia and New Zealand: Results of a cross sectional explorative descriptive survey
BACKGROUND: Caring for the bereaved is an intrinsic part of intensive care practice with family bereavement support an important aspect of the nursing role at end of life. However, reporting on provision of intensive care family bereavement support at a nation…
The provision of spiritual and pastoral care following stillbirth in Ireland: a mixed methods study
BACKGROUND: The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spirit…
The psychological needs of haematology and oncology patients in a paediatric palliative care perspective: Clinical audit and service development in ireland
Background/Objectives: Palliative care for children with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. The main focus is on enhancing quality of life for the child and supporting…
The relationship between bereaved parental knowledge of events and satisfaction with care
Learning Objectives: Parents have described high-quality end of life care as care that involves giving news with sensitivity, giving clear information on what to expect, and generally preparing families for the circumstances surrounding their child's death. Be…
The Role of Psychology in Pediatric Palliative Care
Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the United St…
The role of radiation therapy in palliative care of children with advanced cancer: Clinical outcomes and patterns of care
BACKGROUND: There are few published data to guide the use and timing of palliative radiation therapy (RT) in children. We aimed to determine the clinical outcomes of palliative RT in children and the relationship with palliative care and hospice referrals. PRO…
The role of the emergency department in pediatric palliative care
Objective: To explore pediatric emergency medicine healthcare providers' perspectives regarding their role in pediatric palliative care. Methodology: A qualitative study was conducted at the CHU Sainte-Justine from January to April 2016. Four interdisciplinary…
THE ROLE OF THE PHARMACIST IN PAEDIATRIC PALLIATIVE CARE
AIM: To explore what involvement pharmacists in the UK have in paediatric palliative care OBJECTIVES: 1. To determine the current roles and services provided by pharmacists to paediatric palliative care patients.2. To establish how other members of the multidi…
The spectrum of children's palliative care needs-a useful tool?
Paediatric palliative care is characterised by the holistic care provided to children living with life-limiting and life threatening conditions, ranging from providing symptom control to bereavement support. Due to the nature of the conditions many of these ch…
Trainee experience and understanding in paediatric palliative care
Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate trainee understa…
Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients
BACKGROUND: Decisions about end-of-life care may be influenced by cultural and disease-specific features. We evaluated associations of demographic variables (race, ethnicity, language, religion, and diagnosis) with end-of-life characteristics (Phase I enrollme…
Trisomy 13 and 18: Selecting the road previously not taken
The care of patients with trisomy 13 and 18 is a source of significant controversy. While these conditions are life limiting, indisputable data refutes the notion that these conditions are lethal or incompatible with life. Despite such evidence, arguments of b…
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies…
Use of Adult-Trained Medical Subspecialists by Children Seeking Medical Subspecialty Care
OBJECTIVES: To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to pediatric…
Use of complementary and alternative medicine by pediatric oncology patients during palliative care
PURPOSE: Although the popularity of complementary and alternative medicine (CAM) has risen in the last decade, information about its use by pediatric patients in palliative care is still scarce. The purpose of the study was to assess the frequency and types of…
Use of opioids in palliative care of children with advanced cancer
Introduction Despite advances in the treatment of cancer in paediatric patients, 15% of children die from the illness progression in Chile, and pain is the most significant symptom in advanced stages. Although the World Health Organization guidelines demonstra…