“Makes you proud to be black eh?”: Reflections on meaningful Indigenous research participation

Abstract

IntroductionThis 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.DiscussionA 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.ConclusionsThere 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.

The prevalence and clinical associations of HTLV‐1 infection in a remote Indigenous community

“…In summary, we found very high HTLV‐1 seropositivity rates among adult residents of a remote Indigenous community, and evidence for disease potentially attributable to HTLV‐1 in nearly one‐third of HTLV‐1‐positive participants. The project integrated clinical research with a health literacy program, using both Indigenous and non‐Indigenous expertise to decolonise research practice 26 . Further investigations will apply the lessons learned from this pilot project to other communities, in order to identify the major modes of HTLV‐1 transmission and the associated disease burden in remote Australia.…”

Talking About The Smokes: a large‐scale, community‐based participatory research project

“…When communities and researchers seek solutions to the same health problems, negotiating this interdependence into a research partnership can help community researchers feel like they are “doing meaningful public health work, not just conducting research” 26 . Ultimately, PR relies on forming the right partnerships 27 .…”

“…Research assistants recruited by ACCHSs from the local population enhanced trust and increased participant recruitment, as did the provision of financial compensation. These strategies are known to increase research response rates in minority populations 26 , 28 , 29 . Aboriginal peoples and Torres Strait Islanders were employed and involved in all aspects of the project, from conception and design to analysis and dissemination.…”

A systematic review of suicide prevention interventions targeting indigenous peoples in Australia, United States, Canada and New Zealand

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