You can't do that! Researching alternate stories of community participation at end of life

This article explores issues that arose when implementing innovative and creative research methods in a research partnership between academics and Home Hospice, a community organisation that uses a community-development approach to deliver a community mentoring program for carers who want to care for a terminally ill person at home. The project aimed to investigate the effects of caring for a dying person at home on the wider community. Thus, it contrasted with almost all previous research, which focused on the needs of the terminally ill person or the situation of the carer. To be sensitive when asking people to talk about emotional issues, the innovative methods of PhotoVoice and participatory network mapping were employed, enabling the participants to remain in control and (hopefully) to flourish as a result of the research process. Although the methods proved successful, recruitment of participants was hampered by gate-keeping within and beyond the organisation. We conclude that the dominant social constructions are likely to prevail even when an organisation is trying to change those constructions. In this case, it was constructions of carers as being vulnerable and thus in need of protection from research, but the same principle might apply in other contexts.