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HIV Futures: Tracking the experience of living with HIV

Thu 29 Mar 2007 In: HIV View at Wayback View at NDHA

What does it mean to be HIV positive? How does it affect the hundreds of gay men in our New Zealand community who have the disruptive and still incurable disease? Dr Jeffrey Grierson, a social scientist and researcher based at LaTrobe University in Melbourne, is one of the project leaders on HIV Futures New Zealand 2, launched last month to gauge the experiences and needs of people living with HIV and AIDS in New Zealand. Collective Thinking, the periodical published in New Zealand by and for people with HIV, talks with Grierson about the big research prrogramme currently underway in New Zealand. ********** CT: What is HIV Futures about? DR GRIERSON: It's a research programme of surveys, now done in three countries, that tries to capture the complexity and diversity of the experience of living with HIV. The whole idea of HIV Futures is to try and get a representation of what being HIV positive is like in multiple aspects of people's lives. Historically, there's been a lot of research with positive people that has been about either just health, treatments, or social situation. What we wanted to do with HIV Futures was bring all that together, and look at the interrelationship of those sorts of things, and surprisingly it worked. I think it worked because positive people look at what is a fairly sizable questionnaire and see that it's capturing almost everything about their lives. It's a set of surveys done in three countries now that try to capture the impact that HIV has in lots of aspects in peoples lives. CT: How did the project get started? G: It emerged out of a National Association of People With AIDS conference in Australia where the positive organisations said, we really need to know what the needs and experiences of our constituencies are, we think we know, but we're not sure because we don't have access to a lot of positive people, we only see the people that come through the door. It also started around the time that antiretroviral (ARV) therapy came on the scene, and no-one was really sure what that was going to mean for people's health, employment opportunities, etc. The first round in Australia was fairly modest compared to the second one, when I took over (laughs). A big focus was, what are ARVs going to do, how are people going to experience taking these, what will the impact of side effects be, what's that going to change in terms of peoples' employment status. We also looked at the housing needs, the relationship experiences of positive people. So it sort of came out of that very particular political moment, and was quite opportune. In Australia, it's now tracked across five surveys, really tracked how the post-ARV experience of HIV has changed. CT: It's carried out every two years in Australia? G: Yes, it has been done every two years. It isn't being done this year, we're leaving a slightly longer gap because it was becoming a bit too frequent. We'd spend one year collecting, one year writing up the report, then go straight back into collecting. CT: It's a very comprehensive questionnaire, with a lot of detail required in the answers. How do you convince people that it's worth giving up their time to take part? G: I don't know that we do convince people, people seem to want to do it. We support people in completing it by having as much assistance around that as possible, in terms of providing advice, and an option to complete it online. We do a lot of work before the survey gets printed to be sure that it sits within the reality of peoples lives, so I think people respond to that. It breaks all the rules of this sort of research. Really, one shouldn't be able to post out a 40-page questionnaire by mail and expect people to return it. But somehow it seems to fit with what people want to say about being HIV+. I'm always a little amazed at how many people do spend the time. Historically with HIV, the engagement of both positive people and affected populations in research has been extraordinary. It's been part of the response to HIV in many countries in the world, particularly in Australia and New Zealand. CT: What about some of the traditionally harder to reach communities, like migrants? G: We do work outside of some of the traditional AIDS organisations. Working with migrant populations both here and in Australia we work with the organisations who traditionally provide support services around immigration, or around refugee experience as well as the HIV organisations. Clinicians are really important in giving the surveys to those who are least likely to have contact with other positive people. There are some sectors of the positive population that we won't ever get to, and I think we have to recognise that. People with very poor literacy… we do work around that by working with organisations to provide help filling out the questionnaire. But also people who aren't connected to HIV services or clinicians, we won't get to them, but then neither will any of the other organisations. We always distribute the survey through as many means as possible. We try to saturate the country with HIV Futures questionnaires to ensure they penetrate into the most marginal areas as easily as possible. In New Zealand last time we got 25% of the positive population, fairly comprehensive, including a large refugee group. In Australia, we do about 1000 each time. CT: Where do the results end up? G: Almost as many places as the survey ends up, I guess. The main product from the research is a comprehensive community report, which gets distributed to all orginsations involved in HIV, the Ministry of Health, physicians, and to positive people themselves. We like to do presentations on the key findings, so people have got a way into the report, and we expect the community partners to use it as well. It's a shared responsibility at that point. If there are findings that demonstrate a deficit or problem, then the expectation is that those community organisations that are charged with the responsibility to improve things for positive people will do so. Our work is with them to ensure that they actually act on the findings. The report becomes a reference for people when they want to look at a particular service – is it supported by the evidence? What's the experience of positive people? So it has a fairly direct impact on policy funding and service provision. Certainly in Australia I don't think a funding application from a community organisation around anything to do with HIV would go in without a reference to the HIV Futures data, and I would expect the same here. CT: HIV Futures has been going for a while in Australia, have there been any particular trends across time? G: Things don't change dramatically in terms of HIV-positive issues. There have been general and fairly gentle trends. Overall, there has been an improvement in the social status of positive people over that period, but nothing dramatic. Experience of recent discrimination has decreased, in health services and other settings. The experience of treatments has changed gradually over time, for the population of positive people they're basically easier to deal with, people are having less trouble with treatments and are changing treatments less often. Other trends… less service usage, across a whole range of services, which I think is a good thing. It means people are getting on with their lives a bit more, not needing as many services, and I take that as a good sign. Poverty has remained absolutely steady in Australia, I don't know whether that will change here or not. It'll be really interesting in New Zealand, because it's five years since the first one, and I imagine the changes will come up a lot more dramatically here with that sort of break in between. I wouldn't like to predict what they might be but there will be changes. Collective Thinking - 29th March 2007    

Credit: Collective Thinking

First published: Thursday, 29th March 2007 - 12:00pm

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