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HEALTH-SOUTH AFRICA: Research Is About Changing Lives
Analysis by David Dickinson*
JOHANNESBURG, Jun 3 (IPS) - I live in a country where it has become normal to bury men and women in their thirties. At least it is so at township funerals.
At the cemetery while the women, standing to one side, sing hymns, the men labour in relays to fill the grave. We work shoulder to shoulder, but we do not share what we are thinking: that this person died of AIDS. We are silent at their death, as they were silent in life, as authority has been silent over their passing with euphemistic death certificates.
The loss of any young adult -- an unfinished life -- is a tragedy. When it becomes the norm for parents to bury their children we need to find out why and how it can be changed.
I contribute to one small facet of the huge, expanding field of AIDS research. I research workplace HIV/AIDS programmes and the social agents that form part of these responses. In particular, my research has focused on peer educators -- rank and file employees who, with a few days training, take up a lay role in educating those around them -- and African traditional healers with whom much of the population consult.
Managers, workers and traditional healers make strange bedfellows. That such alliances are even contemplated is because science has stalled. Antiretroviral drugs, the greatest scientific response to the epidemic, contain but do not defeat the virus. With the obduracy of South African’s government AIDS sceptics increasingly by-passed and treatment available through private insurance, company schemes, and the public sector, we are having to come to terms with a much larger group of dissenters: millions of South Africans who still do not know their HIV status; deny a positive result; seek alternative traditional, spiritual or quack treatments; do not enter into antiretroviral programmes; or enter only when death is imminent.
Moreover, new HIV infections continue at rates that mock 25 years of AIDS education. While the natural sciences have failed to produce the deus ex machina that will end AIDS, the social sciences have floundered when confronted with the challenge of behavioural change.
Yet it is quite possible to overlook this. There are a plethora of best practice guides on how to respond to HIV/AIDS in every context. There are at least a dozen guides to running company HIV/AIDS programmes. If we are still struggling to come to grips with the epidemic, just where does this 'best practice' come from? Largely from incestuous cross-referencing that produces a numbing blandness which, all too often, misses the complex realities of people’s lives.
Not infrequently I receive phone calls from organisations intending to produce (yet another) guide for company programmes. My response has become increasingly terse: we don’t need more policy, we need to know how policy can be made to work.
Doing this requires getting off the phone and out of the office. It means talking to people. We need to stop telling them what they should do and start understanding why behaviour is so resilient to change. My work with peer educators has helped to shed light on some of the difficulties.
In one project, a group of peer educators based at a mining operation kept diaries in which they recorded interactions over HIV/AIDS. During the four months of the project one peer educator recorded three AIDS deaths in his family. His account of his brother’s funeral was particularly instructive and shifted my own understanding of graveside silences.
The peer educator’s diary recorded intense conflict within the family as to the cause of death. Three options were in play: AIDS, TB (which was on the death certificate), or witchcraft (of which the deceased’s wife was being accused). The peer educator reported how, after exhaustive effort to convince the family to say it was AIDS, he had only gotten agreement to say his brother had died of TB.
As I read his diary entries leading up to the burial, I was hoping that he would break the silence, but as I talked through events with him I saw the significance of what he had achieved. In the face of competing explanations of AIDS (which circulate in strong currency below the surface), it is easier to say nothing and keep the peace.
Unless we start to uncover these competing claims and unless we understand the dynamics that underpin them, the silence will remain and our well-intentioned policies will count for nought.
Traditional healers are an important part of these competing claims. They offer an alternative world view to that of western science and medicine. How many healers there are in South Africa is not known; perhaps hundreds of thousands.
My research with some of them has included workshopping practice guidelines for HIV/AIDS. Recently I worked with a group of healers which whom I had built a rapport. There was one question that turned my understanding of how we need to work with healers on its head. I (belatedly) asked whether they thought HIV/AIDS was a new disease or an old disease. Ninety percent responded that what we call ‘HIV/AIDS’ is, in fact, other older diseases that healers have long treated.
Subsequent questioning drew out how they see the epidemic stemming from the break down of traditional order. How many HIV-positive people are consulting traditional healers? Multiplying data from my own small sample with the vague estimates of traditional healer numbers it could be three-quarters of a million. Probably an exaggeration, but even if wildly so, that still leaves many engaging in alternatives dialogues around ‘HIV/AIDS’ that we know practically nothing about. We need to.
Research is about changing lives. When it comes to AIDS – and much else – short of a 'magic bullet' for which we still wait, we can only make a difference to peoples’ lives if first we strive to understand them.
*David Dickinson is Associate Professor of HIV/AIDS in the Workplace at the Wits Business School, University of the Witwatersrand, Johannesburg. (END/2008)
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Research findings may be widely published in scientific journals,
peer-reviewed and academically admired -- but are they filtering through to
the public, and bringing about tangible improvements to everyday life?
In partnership with www.research4development.info, IPS is seeking to answer
these questions, enliven the debate about research, and help to ensure that
it does indeed change lives.
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