Looking Forward, Looking Back: Issues of Participation and Consent in Participatory Action Research
Froggatt, Katherine, University of Sheffield, UK

There is increased interest amongst researchers within palliative care in the use of participatory research methods. However, this approach is not without its challenges. This paper aims to explore some methodological, ethical and practical issues concerning participation and consent in the undertaking of participatory action research. Methodological findings from two UK research studies, one completed and one in progress, form the basis of this paper. These studies comprise: 1. A Co-operative inquiry project undertaken by palliative care and oncology clinical nurse specialists and staff from an academic nursing research unit. Meeting over a period of twelve months this group explored the nurses' use of self in practice. 2. A participatory action research study to develop end of life care that involves residents, relatives and staff working in care homes for older people. This study aims to involve residents and their relatives in identify issues concerning end-of-life care in care homes and then working with staff to address these matters. Three issues will be explored within this paper with specific reference to the palliative care research context: 1. How are people recruited to participatory action research when the focus or the process of the research has yet to be fully clarified? 2. What is the nature of consent in participatory action research? 3. How is confidentiality and anonymity defined and maintained within this research approach? With increasing concern about research governance and the protection of research participants, these issues need to be carefully addressed within palliative care research.