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Can you hear us? The Queensland experience of health research with Aboriginal and Torres Strait Islander people0

 

There is growing concern in Queensland about the conduct of health research meeting Indigenous research ethical principles and standards. Key stakeholders raised these concerns during consultations within the national review of Indigenous research ethics commissioned by the National Health and Medical Research Council (NHMRC).

Although the final report is yet to be released, some discussions noted the absence of a Queensland based accredited ethics review body, like that of New South Wales Aboriginal Health and Medical Research Council (AHMRC) and Western Australia Aboriginal Human Ethics Committee (WAAHEC), to coordinate Indigenous ethical review of health research.

The establishment of such accredited state based Indigenous research ethics review committees indicates a lack of confidence by Indigenous peoples in other institutionally based research ethics boards and their review / approval processes. This also indicates that Indigenous people want to have leadership, control and appropriate representation in the review of research ethics applications.

This raises the question on whether there should be one centralised Indigenous research ethics review and approval process nationally or increase the number of state and territory based review bodies. As a researcher, I often lament on the number of approval processes that are required to undertake research with Indigenous people. However, given the number of research projects that have been undertaken in Indigenous communities that have not led to sustainable benefit or impact, one can see why there is disillusionment by Indigenous people about research “on” Indigenous people.

You can view Prof Adrian Miller’s Griffith University biography here.
You can contact Prof Adrian Miller at adrian.miller@griffith.edu.au

This blog may be cited as:
Miller, A. (2016, 24 March) Can you hear us? The Queensland experience of health research with Aboriginal and Torres Strait Islander people. Research Ethics Monthly Retrieved from: https://ahrecs.com/human-research-ethics/can-hear-us-queensland-experience-health-research-aboriginal-torres-strait-islander-people

Navigating ‘Research Fatigue’0

 

In human research, some groups of people (grouped by identity, association, condition and/or location) may become over-represented as research subjects in a particular discipline, or in research generally. These people may develop a sense of ‘research fatigue’ (Clark, 2008) – in simple terms, they’ve been over-researched and now they’re just over it. It is likely that a sense of being mistreated by researchers, a lack of trust between participants and researchers/institutions, and/or a failure of research to return any kind of benefit to the participant community, may exacerbate research fatigue. Subsequently, they may be reluctant to participant in any further research (Clark, 2008).

People belonging to marginalised or vulnerable groups may be particularly susceptible to over-research and research fatigue. This is partly because such groups may be identified as having persistent problems social or medical researchers may be hoping to help, and perhaps also because people in these groups have disproportionately suffered from poor and unethical research practices. For example, in Australia, Aboriginal and Torres Strait Islander Peoples have frequently been the subjects of research conducted without permission, or without due consideration to appropriate and ethical processes (Knight, Comino, Harris, & Jackson-Pulver, 2009; Martin, 2003).

I conducted my PhD research with an over-researched community. The people of North Stradbroke Island/Minjerribah – particularly (but not exclusively) the Quandamooka and other Indigenous Peoples of the Island -are suffering from research and consultation fatigue, and many had complaints about the way they had been treated by earlier researchers, or the fact that the issues they prioritised were being ignored.

Several months after my field work concluded, a colleague of mine – Rachael Cole-Hawthorne, another PhD student – began her fieldwork on North Stradbroke Island/Minjerribah with the Quandamooka Peoples. She encountered an unanticipated ethical difficulty; participants in my research (or people who had heard about me and my research – it’s a small community and people talk!) sometimes mistook her for me. We were PhD students from the same institution, after all, and bore a passing resemblance to one another. The issue of mistaken identity was always laughed off, however it meant that the anonymity of some of my participants had been unintentionally compromised; if they hadn’t mistook Rachael for me, they may not have mentioned their participation in my project.

It also became clear to Rachael that the success of her research rested, to a degree, on the goodwill I had developed. If I had treated participants poorly, or if they found participation unpleasant or uncomfortable, she may have encountered difficulties in recruitment.

As a result of these experiences, Rachael and I are working together on the topic of ethical research with over-researched communities. Our (very) preliminary thoughts, based on a review of the literature and our research experiences to date, suggest a few key considerations for researchers. Firstly, one should not dismiss the possibility of engaging with an over-researched community on that basis alone, but there is a particular onus on the researcher to justify why this site/these people, including to the participants themselves. Obvious relevance and utility, and clear links to the ‘uniqueness’ of that community that makes them the best pool of participants may help overcome initial wariness (and weariness). There is, perhaps, extra impetus to demonstrate a genuine commitment to the over-researched group, and focus additional attention on the building and maintaining of relationships. For me, this included spending as much time as I could on the Island, for blocks of time, rather than making day trips or just talking to people on the phone. Finding ways to connect potential participants to the research topic, and finding ways to deliver meaningful and useful outcomes for them, is also of heightened concern in research fatigued communities. Exploring alternative epistemologies and methodologies may help, including those that allow participants to influence the research approach, analysis, and products. Not only may alternative approaches help create a less exploitative and more mutually beneficial research relationship, the sheer novelty of them may help overcome fatigue. And, as always, researchers should be prepared to hear ‘no’, to respect that answer, and should have a Plan B in case they just can’t overcome research fatigue.

Rachael and I are collaborating with some of our research participants, particularly amongst the Quandamooka community, in putting together an open access publication that will explore these issues. In that vein, we hope to present a few different perspectives on the topic of research fatigue, illuminate some of the issues for researchers to consider when seeking to engage with an over-researched group, and identify some principles and guidelines for ethical practice in this area that are grounded in the experiences of those who are subject to over-research. Stay tuned!

References

Clark, T. (2008). ‘We’re Over-Researched Here!’: Exploring Accounts of Research Fatigue within Qualitative Research Engagements. Sociology, 42(5), 953-970.

Knight, J. A., Comino, E. J., Harris, E., & Jackson-Pulver, L. (2009). Indigenous Research: A Commitment to Walking the Talk. The Gudaga Study – an Australian Case Study. Bioethical Inquiry, 6(4), 467-476. doi: 10.1007/s11673-009-9186-x

Martin, K. B. M. (2003). Ways of knowing, being and doing: A theoretical framework and methods for indigenous and indigenist re-search. Journal of Australian Studies, 27(76), 203-214.

Dr Natalie Osborne,
School of Environment, Griffith University,
View Natalie’s ResearchGate profile,
n.osborne@griffith.edu.au

This blog may be cited as:
Osborne, N (2015, 2 November) Navigating ‘Research Fatigue’. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/navigating-research-fatigue

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