OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the…
OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw…
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…
Infants born at extreme preterm gestation are at risk for both death and disability. Although rates of survival have improved for this population, and some evidence suggests a trend toward decreased neuromotor impairment over the past decades, a…
BACKGROUND: These recommendations have been developed to improve the care of intensive care unit (ICU) patients during the dying process. The recommendations build on those published in 2003 and highlight recent developments in the field from a U.S.…
BACKGROUND: There is an increasing trend towards lower participation in questionnaire surveys. This reduces representativeness, increases costs and introduces particular challenges to longitudinal surveys, as researchers have to use complex…
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…
In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from…
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…
