Background The development of the evidence-base informing end of life (EoL) care is
hampered by the assumption that patients at the EoL are too vulnerable to participate in …

Background Despite being a core business of medicine, end of life care (EoLC) is neglected.
It is hampered by research that is difficult to conduct with no common standards. We aimed …

Objectives To present and discuss the views of researchers at an academic palliative care
research centre on research encounters with terminally ill patients in the home setting and to …

Background: Conducting research with dying persons can be controversial and challenging
due to concerns for the vulnerability of the dying and the potential burden on those who …

Background As understandings of the impacts of end-of-life experiences on parents' grief
and bereavement increase, so too does the inclusion of bereaved parents into research …

Background: Despite growing interest in patient engagement in research, there are few
empirical investigations of the nature of engagement and its effects. This information is …

Background As in other areas of health delivery, there is a need to ensure that end-of-life
care is guided by patient centred research. A systematic review was undertaken to examine …

ABSTRACT A fundamental tension surrounds the ethics of conducting research in
vulnerable populations, and specifically, research involving patients at or near the end-of …

The importance of user involvement in the organisation and delivery of health services and
the conduct of research has increased over recent decades. Involving people at the end of …

Background: This project was conducted to investigate whether the concerns that
researchers have about including terminally ill patients in research were shared by a sample …