Celebrating strength: the role of resilience in responding to blood borne viruses and sexually transmitted infections among Indigenous communities

HIV Australia | Vol. 11 No. 3 | October 2013

By Maurice Shipp,¹ Edward Wilkes,¹ John Kaldor² and Dennis Gray.¹

‘Tangible strengths, such as young Indigenous people’s commitments to condoms and STI screening should be celebrated and bolstered to enhance their ability to protect themselves against adverse health outcomes and enhance their resilience against STIs.’¹

Introduction

The Indigenous resiliency project is a collaboration of International researchers examining the role that resiliency plays in responding to sexually transmissible infections (STIs) and blood borne viruses (BBVs) in Indigenous communities in Australia, New Zealand, and Canada.

The Australian arm of this research – which involves Indigenous researchers, peer researchers, and health service staff – is seeking to understand the role resilience plays in protecting Indigenous young people from acquiring BBVs and STIs.

The project aims to identify and implement strategies to enhance these protective factors, which can then be used by Aboriginal and Torres Strait Islander health services.²

The focus on resilience is of central importance to the project. This allows the research to step outside the discourse of disadvantage and to highlight health issues experienced by Indigenous young people in a way that is empowering and celebrates strength.^{3, 4}

Background

In 2002, the Australian National Health and Medical Research Council (NHMRC), the Canadian Institute of Health Research (CIHR) and the Health Research Council of New Zealand (NZ HRC) announced the establishment of a partnership to jointly invest in research which would contribute to improved health outcomes to reduce health inequalities for Indigenous people in each of the partner countries.

A grants scheme, under the name International Collaborative Indigenous Health Research Partnership (ICIHRP), was set up to support cross-country, multidisciplinary and multi-sectoral research and research translation, with the aim of building upon existing networks of Indigenous health researchers and to further develop research in a range of priority areas.

The first call for funding submissions went out in 2004, and specified that applications should be made up of teams representing all three countries, and that submissions should address the theme of ‘resilience’ in Indigenous health.

In response to this call, an Australian research team was formed. It consisted of researchers from the National Centre in HIV Epidemiology and Clinical Research at the University of New South Wales (now known as the Kirby Institute) as well as leaders from three major Aboriginal community controlled health services, in Townsville, Sydney and Perth.

The Australian team linked up with teams from New Zealand and Canada, and submitted an application that proposed a community-based research project, using qualitative and quantitative methods, to explore young Aboriginal and Torres Strait Islander people’s resilience when facing the threat of blood borne viral and sexually transmitted infections.

The application was successful in the first ICIHRP funding round, and was the only submission in all three countries to be awarded funding that year.

A key component of the Australian project was working directly with the three participating Aboriginal Community Controlled Health Services (ACCHS).

ACCHS are a unique feature of Australia’s health landscape that distinguishes it from primary care services for Indigenous people in Canada, New Zealand and elsewhere.

These services have direct access to young Aboriginal and Torres Strait Islander people, as well as clinical data with the potential to inform research and practice in this area.

A key question for the research team was whether the ACCHS staff and management boards would allow access to this data for the purposes of the research.

Phases of the research

The research plan developed by the Australian partners was made up of several phases.

First, consultations would take place with each of the participating ACCHS, including meetings with staff, management boards and external stakeholders.

Second, a round of participatory action research would be implemented, through which ACCHS could identify and address research questions of interest to them.

Third, a clinical audit would take place, involving a review of services’ experience with testing and other service provision for blood borne viral and sexually transmitted infection.

Finally, a quantitative survey would be undertaken among young people attending, or in the catchment area of each service. All of the projects would require approval and involvement of the ACCHS, as well as approval by relevant ethics committees.

Overall conduct of the project was to be guided by a steering committee made up of representatives of the university-based research team and all three ACCHS.

Also within the steering committee an Indigenous Caucus was formed, which met separately and reported back to the steering committee.

Study plans were approved by the steering committee, and then sent for approval to all relevant ethics committees.

The first phase of the research, conducted in 2006, included the setting up of processes and procedures to engage with focus groups and conduct in-depth interviews with service providers, young people, and other community members.

The project then moved to the participatory action research (PAR) phase at two ACCHS, in order to integrate research with practice and community involvement.

From the outset it was agreed that the development of interventions would be led from participating ACCHS and their communities, with guidance and support to be provided through the research team.

This work at one of the ACCHS led to several reports and other publications^5–7 on the findings, and led directly into the survey phase of the research.

This phase involved development of questionnaires seeking information on experiences, understandings and behaviours relevant to understanding resiliency in relation to sexual behaviour, drug use and patterns of health service usage.

Surveys were conducted among of samples of young Aboriginal and Torres Strait Islander people − recruited from among clients of the participating ACCHS, older high school students, and participants in community events − in Townsville, and Perth and south west WA, in 2010.

The surveys were conducted by staff from two ACCHS with the assistance of staff from UNSW.

The survey data were entered into a computer and analysed by staff from the ACCHS and staff from UNSW and Curtin University. Analyses included a focus on knowledge, sexual and drug use behaviour, access to health services, history of sexually transmitted infections, and attitudes as measured by a previously published scale for assessing Indigenous resilience.

Reports on this quantitative phase are being finalised at the time of writing this article.

Professional ethics and cultural considerations

Despite a number of changes in membership of the team, a core of researchers and health service staff have followed the project through and completed most of the tasks we set ourselves.

One of the three ACCHS withdrew from the project during 2011. The team faced a number of issues that are by no means unique to this project, but were certainly highlighted by it.

A constant theme faced by the team was the need to ensure that there was proper respect and resourcing for Aboriginal community involvement.

Intellectual property rights and ownership of the research must be sorted out before any research is conducted.

The relationship between researchers is also a crucial factor; Aboriginal and non-Aboriginal researchers working together must understand the importance of professional ethics with regards to each other and be prepared to understand the cultural diversity within such a team.

Aboriginal ways of conducting research are not necessarily different; however, Aboriginal people have a historical that must be recognised and taken into account.

Aboriginal Australians may be more inclined to scrutinise and monitor the ethics and morals of research, and its possible links to various forms of oppression, dispossession and discrimination.

The Aboriginal community, in many respects, is small and intimate thus researchers can ill afford to upset the balance as a result of their research.

Miscommunications and misunderstandings, if not handled properly, can lead to anxieties and falling out among even the most well intentioned partnerships.

Aboriginal Australians today are calling for research to focus on practical contemporary outcomes for families and community.

After the initial five years, the research team made the decision that leadership of the project should pass from the Kirby Institute to the National Drug Research Institute.

The main reason for this change was the desire by the team for an Aboriginal researcher to oversee the project, and in a spirit of building Aboriginal capacity Associate Professor Ted Wilkes was asked to take on the role of Principal Investigator.

Outcomes

The project is now in its final year, and can claim several real successes.

First, it has collected new information about resilience of young Aboriginal and Torres Strait Islander people in responding to the risk of blood borne viral and sexually transmitted infections.

So far, there has not been a major HIV epidemic among Indigenous communities in Australia, an outcome that must be understood if it is to be sustained.

Both the qualitative research that has been published, and the quantitative data that are still being analysed, showed that young people have a good understanding of how to protect themselves from these infections, and adopt strategies that in many cases are likely to be effective.

In preliminary analyses we have also found that those who have higher scores on the resilience scale are generally those who adopt these strategies, whether in regard to higher levels of safe sex practice, or greater avoidance of excessive alcohol or drug use.

Second, the research process has supported several ACCHS, and several Aboriginal staff, to gain experience in the processes and purposes of research.

Skills have been transferred in developing research projects, collecting data, analysing results and presenting to internal and external audiences.

Techniques ranging from questionnaire design to data analyses are now much more familiar to some key Aboriginal staff at participating services.

Third, the university-based investigators have had many valuable insights and lessons into the way that Aboriginal health services and communities wish to engage with research processes and personnel.

There are written guides for research conduct, but the best guide is always going to be experience.

On the other hand, the project met challenges along the way. It was immediately apparent that the funds provided by the project were barely enough to properly support research at one service, let alone three.

After taking account of the coordinator salary and meeting costs, there was not enough to employ a full time person at each of the three ACCHS, and they found it difficult to recruit part-timers or split existing staff members roles.

One consequence was that engagement in the project was never straightforward for participating ACCHS.

The international element was difficult to operationalise on an ongoing basis.

The team had annual meetings that were very fulfilling with international counterparts, and the occasional teleconference, but in reality the three countries operated quite independently.

This was only to be expected, given the differences ranging from time zones to health systems to research priorities. The ICIHRP has very laudable aims, but practicalities may need more thought.

The conduct of research that is for the benefit of Aboriginal and Torres Strait Islander people is a key priority of the NHMRC, and it deserves to be commended for the ICIHRP funding initiative.

We researchers, both Aboriginal and non-Aboriginal, are continually trying out new ways to achieve the twin goals of meeting the needs of communities, and meeting the demands of peer-reviewed competitive funding schemes.

Through this project, we took many steps forward and probably a few back, but on the whole believe that we have advanced the cause of using research to improve the health of Aboriginal and Torres Strait Islander people.

This paper is written on behalf of the Indigenous Resiliency Project Partners including the Investigators and members of the Australian Steering Committee.

Author Notes

1 The National Drug Research Institute, Curtin University, Perth, Western Australia; and

2 The Kirby Institute, University of New South Wales, New South Wales, Australia.

References

1 Somers, J., Olsen, J., Erick, W., Scott, R., Akee, A., Maher, L. (2012). Young Indigenous Australians’ Sexually Transmitted Infection Prevention Practices: A Community-based Participatory Research Project. Journal of Community and Applied Social Psychology, 22(6), 519–532.

2 Further information about the project is available at: www.kirby.unsw.edu.au

3 ibid.

4 Somers, J., Olsen, J., Erick, W., Scott, R., Akee, A., Maher, L., (2012), op. cit.

5 Mooney-Somers, J., Olsen, A., Erick, W., Scott, R., Akee, A. Kaldor, et al. (2011). Learning from the past: Young Indigenous people’s accounts of blood-borne viral and sexually transmitted infections as resilience narratives. Culture, Health and Sexuality.

6 Olsen, A., Mooney-Somers, J., Topp, L., Maher, L. (2010). Sexual Health through the Eyes of Indigenous Youth: Conducting Survey Research Training Manual. National Centre in HIV Epidemiology and Clinical Research, University of New South Wales, Sydney.

7 Somers, J., Olsen, J., Erick, W., Scott, R., Akee, A., Maher, L. (2012), op. cit.