Letting them die
‘Letting them Die ‘ How HIV/AIDS prevention programmes often fail’ by Catherine Campbell is a compelling and honest account of why a well-funded intervention in a mining community failed. She spoke to Health-e News.
Duration: 14 minutes and 14 seconds.
It is seldom that a book is published documenting a failure. ‘Letting them Die’ is a compelling account of an AIDS prevention project in a mining community that failed to reduce the levels of HIV and other sexually transmitted infections over a three year period. It’s a fascinating and uncompromisingly honest review that explores some of the dynamics in a community and why people failed to change their behaviour. The author is Dr Catherine Campbell, a Reader at the London School of Economics and External Professor at the University of Natal, she explains why she wrote the book.
CATHY CAMPBELL: Certainly within academic social psychology and within the science of health promotion and the science of behaviour change, there’s now complete consensus that knowledge and attitudes are very poor determinants of behaviour. Health-related behaviour is determined not only by individual factors, but also by factors at a level of peer group, family, community context so on. So it was mystifying to come into the HIV/AIDS world that supposedly was the cutting edge of medical science and to see that people were applying social psychological theory and social science which was old fashioned, very out of date and simply wrong. I came in as an academic with a sense of bewilderment. And I suppose I had been involved in progressive health issues in south Africa in the 80s and had worked a lot with very progressive doctors who were very aware of the social context of illness and who were very determined to challenge the individualistic approach, so it was very disappointing to come back in the late ‘90s and early 2000s and to see that pioneering work during the anti-apartheid years had dribbled away and replaced with what I call a very American, individualist approach to health promotion.
SUE: If knowledge doesn’t change the way we behave, what are the kinds of things we do need to look at?
Knowledge is obviously very important, there’s no doubt that before you change your behaviour you have to know that what you are doing is wrong, so I don’t have any disagreement with that. But I like to use the analogy of smoking, if you walk up to anybody who smokes and you say do you know that smoking is bad for your health, they’re going to say, of course I do. Knowledge is a very weak determinant of behaviour change. What we were trying to get to was to say, it’s a step in the right direction to give people knowledge, but what we also have to do is create environments that enable people to act on that knowledge. I suppose that’s what some of us in the project were trying to develop when we became involved.
Once we pulled together the partners, people tended to have quite a lot of faith in knowledge, to be quite bio-medical in their outlook and in a way, what was designed as a very very progressive project to criticise existing approaches, by virtue of the people involved, became a less progressive project and one that ended up relying a lot on bio-medical factors. Not that much energy was put into the community dimensions of the project and as a result those did not bear fruit.
I suppose the reason I wrote the book, the project had a lot of critics from the beginning, and at the end when the STI results did not go down after three years, a lot of critics said that this showed that community projects don’t work and what I was particularly keen to say that this was that this was not a community project. On paper it was a community project, but in practice it really was quite a traditional project using the old style bio-medical and behaviourist approaches. Therefore do not use this project as evidence that community projects don’t work.
SUE: So how do you truly involve a community in an AIDS prevention project? How do you get poor people to take seriously a virus that only has an impact in five or ten years time when people’s immediate needs are to find food, a job and some comfort in life?
CC: I think It’s not always possible to deal with problems at a community level particularly when they’re determined by extra community factors like poverty, gender, stigma and that kind of thing. It’s not an easy goal. But there are examples. UNAIDS has done research on projects that have been successful in various low-income countries and contexts all over the world and found that in some situations it has been possible to improve health without getting rid of poverty. But those have been contexts where there was a lot of support for projects from powerful people. There was a synergy between the local project and govt policy, there were powerful actors and agencies in the society that supported the project and it wasn’t just local people trying to solve their health problems on their own, they did have support maybe at the level of policy, at the level of intervention, clinics and very importantly, supoprt from local and national government. It’s a matter of pulling together this clichÃ© of ‘stake holder partnerships’, which is thrown around so much it’s lost any meaning at all, but in the true sense of stakeholder partnerships where a group of people who influence and live and work in a particular community get together and really commit themselves to developing new approaches, to understanding the social context of a problem and really commit themselves to supporting grassroots people to change their behaviour it can happen. It can happen. We need to hold out for that.
SUE: For all the tragedy brought by the AIDS pandemic, Campbell says intervention programmes do offer a chance for people to get information and resources that can help them re-shape their lives.
CC: We need to be aiming for is to create experiences for people where they are able to take control of their health and to strengthen communities to respond to HIV prevention and AIDS care in positive ways. And also to strengthen individuals, families and communities to reconstruct their lives once the impact of the epidemic is over. And also to empower people to take control of their health so they’re protected against future epidemics. AIDS is not the only problem that is ever going to happen.
It seems to me that a wonderful opportunity for social development through health. It’s an opportunity that’s being missed here and that seems to me very sad. It’s a gift on a plate. I mean this terrible epidemic is here, people are dying and suffering in incredible numbers, but it could have been used, because it affects so many people in so many obscure and marginalised places, it could have been used as a kind of node for mobilising people and that opportunity to date has been lost, but one hopes that things will change.
SUE: One aim of the Summertown project was to empower sex workers in the area who were at extremely high risk of HIV and other sexually transmitted infections. For all that the project did not meet its goals, were there at least some gains?
CC: Firstly one has to say the project’s community outreach co-ordinator was an exceptional individual and here I’m contradicting myself because I’m trying to say that individuals aren’t that important. But one thing that comes out of the experience of AIDS projects the world over, is that project workers need to have determination, they need to have passion and persistence in the face of obstacles and in Summertown we had that. She was a senior nursing sister with a huge amount of medical knowledge and background and experience. She went into the community in a way where she really approached the sex workers who came from very marginalised destitute backgrounds and were very demoralised by life in all sorts of ways, and she approached people with great respect. And she worked hard to give women a sense of ownership and control of the project right from the beginning so there was no sense that this was a top-down programme imposed by the province or the mining industry. So there what she did was to create a motivated and united core of women in tremendously marginalised informal settlements. And these women worked extremely hard for no pay or for small incentives to try to work with their peers to change behaviour. They were quite successful at reaching a certain group of women. There were a group of women who were motivated and keen to become involved, but there was tremendous resistance amongst other women. Women’s living conditions were such, their personal life histories were such that they’d never really experiences of taking control of their lives and of seeing themselves as valuable or worthwhile and as result they’d become very fatalistic they’d become what the sex worker peer educators called ‘very stubborn’ and were really quite cynical about the project and quite negative about it.
Also in a community of very poor people, if some people get ahead, others will often be very jealous and I think that that happened. The fact that the peer educator group was strong, united seen as very successful, created a sense of jealousy from other sex workers. So they carped and almost tried to undermine the programme ‘ saying that if this programme succeeds these women will be praised, they’ll get the benefit, what will we gain? So there was that kind of competition. And in this context it was very difficult for women to present a united front. Okay, the mineworker clients who didn’t want to use condoms for a whole series of reasons and because women didn’t stick together the miners knew that if one woman refused to use condoms they could just keep on going from one shack to another and eventually they would find somebody who wouldn’t use condoms. And what happened is that women who were motivated to use condoms starting losing business. And whre people are living from hand to mouth it wasn’t possible to do. And then, in an atmosphere where people so poor and so tense, people didn’t think critically and sympathetically of one another. People were competitive and quick to criticise each other. So a lot of tension and conflict developed around the condom issue and ironically it divided people more than ever.
However, the main reason why the condom programme didn’t work was because the mineworker clients refused to use the condoms. In the end, it’s silly of us to be sitting here expecting women to take responsibility for sexual encounters which are controlled by economically dominant men. We have to look beyond the narrow community and look at the fact that the mineworkers in the programme did not receive proper peer education from the mining industry. The mining industry and unions were really very tardy in their involvement in the social side of the project.
SUE: Campbell stresses that economic power is a critical factor for women’s empowerment .
CC: The fact was that in this situation, women had very little economic power and that they depended on men for their livelihoods and because of that, the men really could practice quite a divide and rule strategy. Men could play women off against each one and women would collude in that because they all wanted to have special relationships with particular men in order to make a living and have an income and then what I emphasise in the book is that all the women were very keen, the kind of happy ending story that every woman spoke of, was that she would find a man who would fall in love with her and take her into his life and support her and all women were aiming for that and because of that they were at the mercy of unscrupulous men who would say, ‘I love you, I love you, I love you’ and they’d have unprotected sex for free and at the end of the month when the men was meant to come with his pay packet he would just disappear.
Women will only be able to unite properly when they’re economically independent and that’s obviously a key problem in South Africa.
SUE: ‘Letting them Die’ is a book that talks about an AIDS intervention project that aimed to function as a bottom-up community effort, but failed for a variety of reasons ‘ not least because social factors and peer group pressure were not taken into account. Campbell is adamant that the only way people will be enabled to change their behaviour and negotiate safer, more meaningful lifestyles is through a holistic effort which involves everyone in a community.
CC: Programmes aren’t going to succeed without partnerships, but we have to somehow get people to realise that in a partnership it’s not just the poor people with AIDS who have to change it’s also the government – the provincial government, the private sector, the bio-medical researchers. I talk in the book how in South Africa we use the word ‘communities’ and ‘stakeholders’ in two kinds of ways. On the one hand we talk about communities as ‘targets of change’, when we talk about that we refer to poor, marginalised people and we talk about communities as ‘agents of change’ and we mean the representative of the public sector, the private sector, you know the academic research etc. etc. That’s probably the biggest obstacle to HIV prevention in SA is that there’s a denial among more powerful people that they also need to change their attitudes, their conceptualisations, their practices. So instead of saying it’s the poor people there in the townships who have to change, it’s whole range of far more influential actors and agencies who also need to change. Even international donors.
SUE: And change to what?
Well, we need to firstly be willing and open-minded. The main thing about an epidemic is it’s an extraordinary event. An epidemic develops by definition because existing understanding and existing practices aren’t working. So that’s the bottom line. So if people are going to form partnerships to try and address problems, there has to be a humility among everybody that what people know and do at present doesn’t work and let’s put our heads together and try to develop new ways of thinking and new ways of acting. Without that humility, without that willingness, without what I call the political will to change I think a partnership becomes meaningless.
I think a lot of people just think a partnership means a group of diverse people sitting around a table once every month, rather than a group of people really looking at the way in which their own actions and practices and beliefs contribute to the problem and negotiating with other people how they should change.
There needs to be more of a public discussion and an atmosphere of humility around AIDS and I think that doesn’t happen.
SUE: Whether it be in the most remote rural communities or townships on the outskirts of mines and urban areas, for change to happen requires involvement from all levels of society.
CC: ZackieAchmat said recently, every body is sitting around expecting poor people to bring about the social change. People in the middle, people at the top are not that willing or open either. We have to get rid of this blaming thing and people with more access to political power and wealth need to really be more humble about their own need to reflect on their actions and practices and to change those.
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