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HIV Social Research and African Communities in the UK: Building the Evidence Base
The impact of HIV on African communities living in the UK is profound. Behind those startling figures of rapid rises in heterosexual transmission of HIV in the UK lie many individuals, families and communities struggling with new infections, illness, death, stigma and separation from family and home.
These experiences of hardship and struggle resonate for those of us who were involved in earlier phases of the HIV epidemic. Stigma, prejudice, illness, death, loss - these are themes common to HIV in many places and times. But the particular interaction of these experiences with so many other social factors - migration, different languages, racism, different social and family norms, poverty, asylum, separation from family, different gender norms - make the picture of HIV for African communities a complex one. There is a set of circumstances which makes living with HIV as an African in the UK unique.
For those of us working in HIV, understanding this picture is not easy. The National AIDS Trust (NAT) worked in partnership with the African HIV Policy Network (AHPN) to lead policy development in this area last year, resulting in the soon to be published HIV Prevention and African Communities Living in England - A Framework for Action. The AHPN are developing a similar piece of work on the social care needs of Africans with HIV living in England. What we learnt through that work, and what many Africans working in HIV already know, is that the term 'African' means so much and yet so little. Yes, it's a signifier often for many of the problems listed above - difference, migration, social exclusion, racism - but so many cultures and societies and experiences and norms exist under that title, that the main task required of many of us is fundamentally to learn much more.
As many of us struggle either to make our services more relevant to African communities, or to establish and develop African-led HIV organisations, what we need to guide our work is greater insight - insight into the many factors that shape behaviour in communities that are markedly different from gay men's communities.
Some key questions are: What are some of the patterns of socialising and sexual mixing? What is the significance of national or tribal associations? What communities are well established in the UK, and what communities are new? How does religion shape peoples' understandings of HIV? What are the implications for a wife and mother from a traditional cultural background of disclosing to her husband that she is HIV positive? How do you tell your children that you're sick with an HIV related illness? What are the social implications of not breast-feeding? How do you encourage your partner to find a clinic that can test you for HIV? How to prioritise health over financial difficulties? How will young people find out about HIV? What is the impact of migration on health? Are beliefs about masculinity and traditional gender roles getting in the way of behaviour change? Are asylum seekers getting access to information and condoms?
So many questions, so much unknown. It is in this context that much of the HIV work targeting African communities is conducted in this country. We have the precious expertise that lies in African community organisations about community norms, practices and belief systems. And we have a growing expertise across the sector about what works in HIV prevention. But what we don't have is the insight and knowledge about culture, community and behaviour that comes from a national programme of social research into the UK's African communities.
At present a number of small studies have guided our work. They have been enormously useful in beginning to understand need, and targeting work more appropriately. But the vast sum of what we don't know can be overwhelming.
The National African HIV Prevention Framework, soon to be published by the Department of Health, outlines some of the key priority areas for HIV social research in African communities:
Epidemiology and monitoring - much remains unknown about the epidemiological and demographic features of the African HIV epidemic, and this becomes more urgent as the dispersal system forces many new and vulnerable people out of London.
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Sexual behaviour - there is a critical need for a better understanding of the sexual behaviours and attitudes of Africans with or at risk of HIV, in the context of cultural practices and beliefs, relationships, gender disparity, and economic status.
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Gender specific research - there is an urgent need for more understanding of attitudes, beliefs and practices surrounding breast-feeding, pregnancy and termination, experiences of antenatal testing, male approaches to condom use, experiences and behaviours of African men, sexual negotiation and masculinity.
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Specific sub-populations - more information is needed on asylum seekers and visitors, Africans who inject drugs, African men who have sex with men and African sex workers.
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Health services and prevention interventions - patterns of service use by African communities, evaluation of HIV prevention interventions, the development of research tools to reflect African community experience.
This list is by no means exhaustive. It comes from a national policy approach to HIV prevention, and we can expect that many more items would be added to this list were we to approach it from the perspective of clinical care or community support.
Last Updated June 27, 2006