Publications

Objectives To explore intercountry and intracountry differences in physician opinions about continuous use of sedatives (CUS), and factors associated with their approval of CUS. Settings Secondary analysis of a questionnaire study. Participants Palliative care physicians in Germany (N=273), Italy (N=198), Japan (N=334) and the UK (N=111). Primary and secondary outcome measures Physician approval for CUS in four situations, intention and ...

Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care ...

Objective To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurologic conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables.Study design Modified RAND/University of California at Los Angeles appropriateness method. We identified potential indicators per illness group through ...

As previous research has paid little attention to environmental factors affecting the practice of continuous deep sedation until death (CDS), we aimed to explore these using physiciansU+2019 experiences and perceptions. We performed an interpretative thematic analysis of primary data from a qualitative interview study conducted from February to May 2019 in Belgium with 47 physicians. Structural factors were identified: the lack of professional ...

Background: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making.Aim: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant.Design: Qualitative study using face-to-face ...

Background: Close relatives provide much of the care to people with cancer. As resilience can shield family caregivers from mental health problems, there has been a burgeoning interest in resilience-promoting interventions. However, the evidence necessary for the development of these interventions is scant and unsynthesized. Aim: To create an overall picture of evidence on resilience in cancer caregiving by a theory-driven meta-synthesis. ...

Background: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.Objective: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of ...

Background: Due to medical advances and an increasingly ageing population, the number of people living with a serious illness is rising. This has major implications for the burden on family members of assisting with care. Support of family caregivers by healthcare professionals is needed to ensure they can provide quality care for people with serious illness. Aim: To investigate how family caregivers of people with serious illness are supported ...