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Aboriginal people have been examined, measured and asked questions … They have been passive subjects rather than participants.
1
Despite the volume of research conducted on the healthof Indigenous Australians, there is a perception thatIndigenous people have derived little direct benefit fromthese efforts.
2
The history of research on Indigenous
The Indigenous Resiliency Project: a workedexample of community-basedparticipatory research
Abstract:
Community-based participatoryresearch (CBPR) is often cited as a suitablemethodological approach for academic researcherswanting to work collaboratively with Indigenouscommunities. This paper describes the IndigenousResiliency Project currently being conducted inRedfern, Townsville and Perth. This case study isused to demonstrate how a group of university- based researchers and Aboriginal CommunityControlled Health Services have used CBPR towork with young Indigenous Australians toexplore young people’s perspectives on resiliencein relation to bloodborne viruses and sexuallytransmissible infections. This paper also describessome initial benefits gained through the processof developing the Indigenous Resiliency CBPR Project, such as: developing research capacity;establishing relationships between communityorganisations and research institutions; and priori-tising ethical and social considerations in theconduct of research. A commentary on the experi-ence of one health worker involved in the projectaccompanies the paper.
Julie Mooney-Somers
A,B
and Lisa Maher
A
A
National Centre in HIV Epidemiology and Clinical Research,University of New South Wales (on behalf of the Indigenous Resiliency Project Australian Steering Committee)
B
Corresponding author. Email: jmooneysomers@nchecr.unsw.edu.au
peoples, both locally and internationally, has produced adeep suspicion of research, with a recent series of com-munity workshops indicating that Australian Indigenouscommunities remain suspicious of research conducted by mainstream organisations.
1,3,4
In 2002, the NationalHealth and Medical Research Council (NHMRC)launched its Road Map, a set of guidelines for healthresearch with Indigenous communities calling for ‘com-munity involvement in the development, conduct and communication of research’.
5
More recently, the NationalStatement on Ethical Conduct in Human Research statesthat the ‘research approach should value and create oppor-tunities to draw on the knowledge and wisdom of Aboriginal and Torres Strait Islander Peoples by their active engagement in the research processes, including theinterpretation of the research data’.
6
Aboriginal and TorresStrait Islander organisations have developed their ownresearch protocols for researchers wanting to work withIndigenous communities, and a number of HumanResearch Ethics Committees have been established toassess research affecting Indigenous people and their communities.
7
It is in this context that Indigenous healthresearch increasingly involves partnerships betweenuniversity-based researchers and Indigenous communitiesand organisations. These partnerships are seen as a way of ensuring research is responsive to community needs, con-ducted in a culturally appropriate manner, and beneficialto the community.Community-based participatory research (CBPR) is anapproach that allows researchers to work with communi-ties to generate knowledge about and solutions to prob-lems the community is facing. This framework repositionsthe people who would usually be the object of the researchas participants in the research process; ‘the researched become the researchers’.
8
CBPR involves more than con-sultation; it focuses on developing community capacityto participate as co-investigators in developing, conduct-ing and disseminating the research.
9
It encompassesapproaches such as participatory action research, actionresearch, partnership research and collaborative inquiry,and is characterised by an emphasis on communities as co-researchers. A review of CBPR undertaken in the United States suggests two core elements: a reciprocal co-learner relationship between researchers and communities (whichincludes shared decision-making and the removal of barri-ers to participation); and the immediate and direct benefit
10.1071/NB09007
Vol. 20(7–8) 2009 NSW Public Health Bulletin |
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The Indigenous Resiliency Project
of new knowledge (which includes shared ownership of research products).
9
CBPR has often been utilised in research with vulnerableor marginalised populations and is increasingly employed in research with Indigenous communities.
1,9–17
The princi- ples and characteristics of CBPR are considered to havethe potential to address the failings, and ‘colonising-effects’, of previous research on Indigenous peoples.
8
Further, by involving affected communities in the analysisand interpretation of data, CBPR has the potential to avoid the misrepresentation of ‘Indigenous societies, culture and persons by non-Indigenous academics and professionals’.
8
Instead of seeing ‘experts’ – usually non-Indigenous people – as the only legitimate source of knowledge,CBPR recognises and values the knowledge of ‘ordinary’ people. While the technical knowledge of researchers isvaluable, it is not the only legitimate way of knowing aboutthe world.
18
Moreover, prioritising community members’knowledge of community needs and perspectives mayincrease the likelihood of any intervention arising from theresearch having beneficial outcomes for the affected com-munity.
9
While a CBPR framework is increasingly used inmainstream public health research, there are few published examples of the day-to-day practicalities of using thisframework to undertake research with Indigenous com-munities in Australia. This paper uses the IndigenousResiliency Project as a case study to demonstrate how aCBPR approach can be employed to develop community- based research into highly sensitive and challenging healthissues.
The Indigenous Resiliency Project
The Indigenous Resiliency CBPR Project is one compo-nent of an international collaboration exploring the role of resiliency in responding to bloodborne viruses (BBVs)and sexually transmissible infections (STIs) in Indigenouscommunities in Australia, New Zealand and Canada.Funded by the NHMRC, the Australian component is being undertaken by a collaboration of AboriginalCommunity Controlled Health Services (ACCHS):Townsville Aboriginal and Islanders Health Service(TAIHS), Aboriginal Medical Service, Redfern (AMSRedfern) and Derbarl Yerrigan Health Service, Perth(DY); a research institution, the National Centre inHIV Epidemiology and Clinical Research; and severalindependent Indigenous researchers. This collaborationworked with international partners to develop a fundingapplication. The Boards of Directors of the three partici- pating ACCHS reviewed and approved each component of the project during the initial project development stage,and again when each component began. Formal ethicalreview processes have been followed through the HumanResearch Ethics Committees of the Aboriginal Healthand Medical Research Council of NSW, the WesternAustralian Office of Aboriginal Health and the Universityof New South Wales. An Australian Steering Committee(ASC), made up of two representatives from the threecommunity partners and the research partner, along withseveral independent Indigenous researchers, oversees thedevelopment of the project. The ASC provides guidanceon scientific, administrative and budgetary matters and determines areas of priority for the project. The ASC playsa vital leadership role in advising on cultural mattersrelated to the conduct of the study, including the reviewand approval of all project dissemination, and assists instrengthening communication with all key stakeholder communities. This is the forum through which shared decision-making is achieved and the shared ownership of research products is protected.
9
The Indigenous Resiliency CBPR Project brings youngIndigenous Australians, participating health services and university-based researchers together to develop and conduct qualitative research on what protects youngIndigenous Australians against BBVs and STIs. It aimsto build the capacity of participating health services inresearch practice; identify, assess and enhance the STI and BBV resilience capability of Aboriginal and Torres StraitIslander people in three project sites; and inform opportu-nities to decrease the risk of STI and BBV transmissionin project site communities. In each project site, a locallyemployed (but centrally-funded) site coordinator and health service staff, under the guidance of their Board of Directors, work with a project-based qualitative studycoordinator and university-based researchers to engagewith young Indigenous people from the local community(peer researchers) to develop and conduct the project. TheIndigenous Resiliency CBPR Project is not a multi-site project where the same protocol is implemented across allsites. Instead, each project ‘is a custom job’, with the local projects recognising diversity by developing in response tothe priorities – and capacities – of the local communityand health service.
19
Methods
Individual interviews and focus groups are being used toexplore young people’s lived experiences of sexual behav-iour and drug use, learning about STIs and BBVs intheir families and communities, and accessing servicesfor prevention, testing and treatment. These qualitativeapproaches offer opportunities for understanding themeaning of sexual behaviour and drug use, and the con-texts in which people contract or avoid STIs and BBVs.Individual face-to-face interviews, in particular, allow peer researchers to create a space where participants canshare stories of how they have drawn on their own and their community’s strengths to keep themselves protected against STIs and BBVs.CBPR is a dynamic process, with the project emerging asthe process proceeds. Project questions and processes are
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likely to be progressively redefined and qualitativemethods are conducive to this. It is also necessary for the project to be flexible to the developing skill and confi-dence of peer researchers (and health service staff). InCBPR, methods are selected on the basis that they are‘useful and useable to all those participating in the process’.
18
This means selecting methods that can be taught quickly to people with a broad range of educa-tional experiences and literacy skills. To date, 20 young people and many health service staff and mentors have been trained in qualitative sampling, developing interviewquestions, and conducting and recording interviews. Indue course, these young people, health service staff and mentors will participate in the thematic analysis of thequalitative data they have collected and disseminate find-ings through the preparation of community reports and involvement in community forums. People have been pro-vided with the skills required to participate actively ineach stage of the research process. The methods used donot need expensive hardware or software. Indeed, most of the data has been collected using pen and paper. This hasallowed the development of a skill base that is more likelyto be sustainable when the project ceases.The relationship between interviewer and interviewee iscrucial in qualitative methods as data is generated throughtheir interactions. The Indigenous Resiliency CBPR Project concerns personal and often stigmatised behav-iours, and the research teams spent a lot of time discussinghow to talk about these in sensitive and culturally appro- priate ways. Semi-structured interviews and focus groupsallow peer researchers to use their knowledge and expert-ise to conduct a conversation around the interview ques-tions and adapt their questions and style for individual participants. Interviews usually began with a conversationabout where the participants’ and researchers’ familieswere from. This was an important cultural protocol tofollow and the amount of time spent on this varied consid-erably, especially if there was a shared family connection.The first question in the interview schedule (in bothTownsville and Redfern) was about the participant’shistory. This allowed the participant to provide a contextfor the interview, and for the researcher and participant toget to know each other before questions about STIs and BBVs began. Again, this was an important cultural proto-col but is not usual for a qualitative research interview.CBPR recognises local methods of knowledge gatheringas valid.
19
Semi-structured interview schedules weredeveloped in the research training and development work-shop held at each site. This meant that the peer researchersand health service staff shaped the question content and the way questions were to be asked. Interviewers used theschedule to guide their conversation, encouraging partici- pants to share personal experiences and stories from their lives. Data was collected by spending time meeting and getting to know people in the community (potential par-ticipants and others). Individual interviews were con-ducted on the street, in parks and shopping malls and incommunity-owned spaces. The flexibility of a qualitativeapproach meant that interviews could be held when anopportunity arose, and could, if necessary, be started, paused and resumed at a different time. In the two active project sites, 95 individual interviews and seven focusgroups have been conducted with young IndigenousAustralians. In each case, an Indigenous researcher – peer,health service staff or mentor – was the interviewer or focus group facilitator.At the time of writing, one project site is engaged in dataanalysis, a second is actively involved in data collection,and the third is developing the project, so there are nooutcome data to report. However, the aims of the projectare not exclusively oriented to data-driven outcomes.CBPR foregrounds action and changes occur in service provision and the lives of people participating in theresearch throughout the project.
9
The remainder of this paper will reflect on the process of the research and describe some process-driven outcomes.
Discussion
Reflecting community priorities
The ASC asked each health service to identify a priority population to engage. In TAIHS, a consultation processwas undertaken internally and with key stakeholders and community members. Consensus emerged around home-less and residentially unstable young people as the priority population group.
20
In contrast, the AMS Redfern had anexisting association with a local Aboriginal Men’s Group(Babana), whom they invited to become a partner in thelocal project. Thus, their priority population becameyoung men.The university-based researchers developed a three-dayresearch development and training workshop coveringresearch ethics, communication, research sampling and recruitment, individual and group interviewing, partici- pant observation, writing field notes and analysis of qual-itative data (these workshops are described elsewhere).
21
Each workshop was tailored to the relevant priority popu-lation and the educational level of the peer researcherstaking part in the project. Peer researchers, health servicesstaff and – in Redfern – mentors, participated in the work-shops. Over the course of the workshops, research processes and materials fundamental to the project weredeveloped. These included inclusion and exclusion criteriafor research participants; a recruitment plan; a list of topics and questions for the individual and group inter-views; and introductory statements for interviews. In thisway, peer researchers, health service staff and university- based researchers collaboratively developed project ques-tions reflecting local priorities and meanings, and
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The Indigenous Resiliency Project: a worked example of community-based participatory research
By Julie Mooney-Somers and Lisa Maher, published in New South Wales Public Health Bulletin 20(8):112–118.
ABSTRACT:Community-based participatory research (CBPR) is often cited as a suitable methodological approach for academic researchers wanting to work collaboratively with Indigenous… (More)
ABSTRACT:Community-based participatory research (CBPR) is often cited as a suitable methodological approach for academic researchers wanting to work collaboratively with Indigenous… (More)
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