London School of Hygiene & Tropical Medicine

While medical advances and the drugs available today mean people infected with HIV can expect to live into retirement, the research reveals that knowledge of modern treatment options has not filtered through to the community. Outdated views that HIV diagnosis equates to a quick death sentence are rife, as is stigma and discrimination. A significant number of participants (particularly women) described a feeling of disempowerment within their relationship, and emotional or psychological abuse was not uncommon.

The details emerge in the Plus One project – the first of its kind - involving qualitative interviews with 60 people (44 with HIV and 16 without) conducted by the Sigma Research team based at LSHTM and trained members of the community. Funded by the African Health Policy Network, Sigma set out to find out more about the complex and little-studied needs of black African people in England affected by HIV and their experiences of relationships where one person has HIV and the other does not. The findings were presented at a meeting in London on Tuesday November 15 alongside a set of recommendations for health and social-care providers and policy makers.

Around 28,000 black African people in the UK are living with HIV with a further 9,000 estimated to have HIV but not aware of it.

Lead author Dr Adam Bourne, Research Fellow at the School, said: "Our study reveals some very troubling stories and highlights individuals or couples in significant need. When we hear about such extreme isolation and fear it feels like we are facing the HIV epidemic as we did 20 or 30 years ago. In 21st century England people living with diagnosed HIV and on treatment can still live healthy and fulfilling lives. It is therefore sad to see such misunderstanding about what HIV means and how it is managed, both from people directly affected by it, and from the broader community.

"The majority of people we spoke to rely on professional support services and have had some really positive experiences of using them, so it is particularly concerning that many face closure due to cutbacks and budget constraints."

The researchers recorded emotionally-charged interviews with individuals, showing how stigma and misinformation can affect their lives.

The fear of isolation is summed up by the words of one woman, who said: "They won’t do anything or come near you. Some they don’t even want to see you. So I would be out of place and should be a nobody. Once you are without your relatives around you, you are a nobody."