Applying participatory health research elements in rural end-of-life research

Abstract

The “Living Loving Dying” research project aimed to improve end of life and bereavement care for people caring and dying in rural areas. The data were provided by people who had experienced caring for someone until his/her death, while living in an area of low population and geographical isolation. Undertaking data collection on such a sensitive topic, from people still vulnerable from the impacts of death and grief, requires the use of particularly sensitive research methods. It is also important that participants feel their voices are heard and that they are contributing to positive change for others. In view of this we positioned people to participate as community-partners and utilized a descriptive qualitative design with participatory elements in the data collection method of in-depth, semi structured interviewing. The non-hierarchical relationship between researchers and community-partners were key influences for using participatory elements in this research with a vulnerable population. In this article we reflect on the pragmatic and ethical considerations that the application of this method has for rural end-of-life research. Show more