Ethical considerations in researching user views.

Abstract

Researching user views has become a central plank of UK cancer and palliative care policy, not least because it is recognized that current systems for treatment reflect inadequately the experiences and concerns of cancer patients. This paper examines the process of accessing user views about cancer and palliative care from an ethical perspective, drawing by way of example on a study of outcomes associated with Macmillan nursing. A moral theory framework is used to discuss some of the issues involved in trying to achieve ethically sound practice and some essentially political issues that frame the process of accessing users' views are highlighted. The paper recommends that models of research be developed for accessing user views that are congruent with the values and philosophies of supportive and palliative care. This requires striking a fine balance between the ethical duties of providing care and support, nurturing independence and autonomy, and achieving research outcomes that are rigorous while also being accessible and meaningful to users. It also requires developing an understanding of the social, political and economic context of research enquiry with users.