Participatory Epidemiology: Methods of the Living with Diabetes Project

Abstract

This article describes how the principles of participatory research were applied to the study of non-insulin dependent diabetes (NIDDM) in an urban Aboriginal community in Melbourne, Australia. The process of developing an appropriate questionnaire and method for the epidemiological study of diabetes was combined with community-controlled initiatives for diabetes management and prevention. A close to full time presence in the community and the flexibility of qualitative methods facilitated the development of a quality working relationship between the researcher and community members and the modification of the research to increase direct community benefit. Creating a balance between the priorities of research and action proved one of the major challenges during the collection of data. Flexibility and communication beyond the completion of the research component were crucial for the development of community-owned diabetes education materials and for consultation and collaboration in the publication of the research results.