What do palliative care patients and their relatives think about research in palliative care? - A systematic review

Abstract

Introduction: Research in palliative care patients has been controversial and is often challenging. It is important to know the views of potentially eligible patients themselves in order to determine the appropriateness of research in the palliative care population and to develop realistic studies that are practical and achievable in this population. This systematic review aims to identify the views of palliative care patients and their families towards research, the factors that are important when considering participation, and the types of research trial they would support or reject. Methods: A systematic literature review was undertaken to identify what is known to date regarding the views of palliative care patients and their relatives towards research participation. Eight relevant studies were identified. Discussion: There is an increasing body of evidence considering the views of palliative care patients towards research in palliative care. However, only three studies have considered the views of their relatives/caregivers. Several common themes emerged from the literature including the potential for personal gain, altruism, the wish to avoid complex studies and a desire to retain autonomy. Trial-related factors were also important determinants of willingness of patients and relatives to participate in research. The views expressed by palliative care patients towards research are similar to those of other patient populations. Conclusion: Research to date in the palliative care setting has suggested that patients are interested in participating in research and may actually benefit from doing so. © Springer-Verlag 2009.