"Makes you proud to be black eh?": reflections on meaningful indigenous research participation.

INTRODUCTION: This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur. DISCUSSION: A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas. CONCLUSIONS: There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.

Australian Aboriginal and Torres Strait Islander communities and the development of pandemic influenza containment strategies: community voices and community control.

OBJECTIVES: To develop culturally appropriate and effective strategies to reduce the risk from pandemic influenza (H1N109) in rural and remote Australian Aboriginal and Torres Strait Islander communities. METHODS: Participatory Action Research (PAR) approach that enabled communities and researchers to work together to develop understanding and take action to reduce risk. RESULTS: The H1N109 pandemic raised deep concerns and serious issues in all of the Aboriginal and Torres Strait Islander communities involved in this project. The participants expressed distrust and scepticism in relation to current Australian health policies on containment and told the researchers that specific plans for Aboriginal and Torres Strait Islander peoples were needed. Respondents indicated that policies and plans had been developed without respectful engagement with communities. The strong and recurring themes that emerged from the PAR cycles were: the importance of family; ways of life and realities of living in response to influenza; and key messages to government and health services to focus on communication, understanding and respect. CONCLUSION: The essential work of reducing risk of pandemic influenza with Aboriginal and Torres Strait Islander communities is not straightforward, but this project has highlighted a number of useful pathways to continue to journey along with communities. A number of strategies to reduce the spread of pandemic influenza in Aboriginal and Torres Strait Islander communities were identified. These strategies would make a good starting point for conversations with communities and health services. In Aboriginal and Torres Strait Islander communities the environment, community structures and traditions vary. Respectful engagement with communities is needed to develop effective policy.