BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to…
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…
Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to…
In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach…
BACKGROUND: Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care…
It is becoming increasingly evident that nutrition is not only an important component of health but also that levels of specific nutrients can affect disease expression. This is particularly apparent in the realm of HIV disease. Despite this…
OBJECTIVE: This study aimed to assess the cost effectiveness of ziprasidone versus haloperidol in sequential intramuscular (IM)/oral treatment of patients with exacerbation of schizophrenia in Spain. METHODS: A cost-effectiveness analysis from the…
BACKGROUND: Mixed methods or multimethod research holds potential for rigorous, methodologically sound investigations in primary care. The objective of this study was to use criteria from the literature to evaluate 5 mixed methods studies in primary…
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet,…
Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer,…
BACKGROUND: Although care pathways are often said to promote teamwork, high-level evidence that supports this statement is lacking. Furthermore, knowledge on conditions and facilitators for successful pathway implementation is scarce. The objective…
This review addresses some of the methodological, theoretical and technical issues related to using satisfaction as an outcome measure of the quality of palliative care. The components of palliative care are presented, and the different approaches…
A notable and welcome increase in palliative care research has led to a multitude of ethical issues and concerns for researchers, clinicians, patients (subjects) and their family members (who also might be subjects), granting agencies, and…
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is…
Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey…
OBJECTIVE: To review the feasibility and effectiveness of n-of-1 randomized controlled trials (n-of-1 trials) in clinical practice. DESIGN: Individual trials were double-blind, randomized, multiple crossover trials. The impact of n-of-1 trials was…
BACKGROUND:
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care…
OBJECTIVE: Identify opioids prescribed, preferred routes, and doses among children with incurable cancer. STUDY DESIGN: Prospective survey with monthly questionnaires regarding patients 0 to 19 years old from oncology centers. Data were collected by…
BACKGROUND: Hip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved…
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…
AIM: The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. BACKGROUND: As a means of achieving consensus on an issue, the Delphi…
Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful…
The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the…
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative…
The aim of this study was to reach consensus about the prognostic factors when deciding the discharge destination from a hospital stroke unit, and to construct a prognostic conceptual framework. To realise an optimal integration of knowledge from…
OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…
A computer and a hand search of the literature recovered 33 papers from which 25 trials suitable for meta-analysis were identified. We compared the effectiveness of cognitive-behavioural treatments with the waiting list control and alternative…
OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The…
Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a…
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…
Investigators of sibling bereavement contend that the death of a sibling represents a unique and intense loss experience. The empirical literature, however, lacks conceptual clarity about the characteristics of sibling bereavement. Metaphors of…
