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AIDS is a disease of the human immune system, which is subsequently weakened. This makes the body more susceptible to secondary infections and diseases (such as tuberculosis) that a healthy individual would be able to fight off.

In order to develop AIDS an individual first has to be carrying the HIV virus. But not everyone who is HIV positive will develop AIDS and the use of antiretroviral drugs has significantly extended life expectancy for people who are HIV positive.

An estimated 34 million people were estimated to be living with HIV/AIDS, as of 2011, 30 million of these live in low and middle income countries. Sub-Saharan Africa (particularly southern and eastern Africa) has been worst affected globally by the epidemic to date.

However, HIV prevalence is declining or has stabilised in many African countries, and the number of people acquiring new HIV infections in 2011 was 25 per cent lower than in 2001. An estimated 15 million children have lost one or both parents to AIDS in Sub-Saharan Africa. This is over a quarter of the total numbers of orphaned children in Sub-Saharan Africa (UNICEF, 2012).

Michel Sidibé, UNAIDS Executive Director: "The pace of progress (in tackling HIV/AIDS) has quickened. Increments of achievement that once stretched over many years are now being reached in far less time…New infection rates have fallen by 50% or more in 25 countries – 13 of them in in sub-Saharan Africa… Half of all the reductions in HIV infections in the past two years have been among children; this has emboldened our conviction that achieving an AIDS-free generation is not only possible, but imminent." (Adapted from 2012 UNAIDS Report on the global AIDS epidemic) 

To find out more about the impacts of the AIDS epidemic, we spoke to Dr Ruth Evans, Lecturer in Human Geography at the University of Reading, about her research into child-headed households in Uganda and Tanzania. Child-headed households are those in which children, who in this case have been orphaned by AIDS, care for their siblings without an adult relative.

What makes Ruth’s research particularly interesting is the way that she went about her research, which involved participants creating art posters, rapping songs and performing video-recorded drama stories. The young people decided which of these creative methods they wanted to do when they took part in ‘participatory workshops’.

AIDS is commonly associated with Africa. Is this a fair generalisation?

There is a lot of geographical diversity in how the epidemic affects different places. Even within countries there are a lot of regional differences and there are also a lot of rural-urban differences. When people talk about AIDS in Africa, they are often referring to eastern and southern Africa. In West Africa, where I have been working most recently, there are much lower rates of HIV prevalence.

It is important to remember that Africa is a continent, not a country. There is huge diversity. The research I did with the child-headed households involved going to regions with high numbers of orphans because I was interested in that. Other areas have been less affected. It's important to remember that HIV is present across the world. In the UK, almost 100,000 people are estimated to be living with HIV and just under a quarter are not aware of their infection.

What sort of rural-urban differences have you come across?

Child-headed households tend to be more common in rural areas because of the resources people have access to – inheriting farmland from their parents, for example – means that it is more viable for young people to sustain themselves in rural areas.

There were some young people living in urban areas but they had usually inherited rental property from their parents, which could then provide a source of income. If children had not inherited property in urban areas, it was quite difficult for them to maintain themselves. Obviously, there is a greater need for a cash income in urban areas, as you need to buy food, pay the bills, for school fees, healthcare, transport costs, and the rent if you do not own a place to live.

Are child-headed households quite common in some areas then?

If you look at the number of orphans generally, the number of child-headed households is small. It is only the minority that live on their own without an adult relative. Often that can be an active choice, if young people have external support from relatives, neighbours or NGOs (non-governmental organisations) and if they have inherited property from their parents they might want to stay living together as siblings, rather than be dispersed among relatives.

Do child-headed households have relatives or neighbours that they turn to?

One of the things that you realise when working in African countries is that people have a lot of responsibility towards each other – not just within their immediate household, but also towards their extended family. People still have ties with family members that do not live in the same locality as them. People that have migrated abroad often have transnational ties and send money back home.

Technology has made it easier to maintain those ties. Obviously people can use the phone, Internet and Skype to keep in contact. I have interviewed some people that had migrated from Africa to the UK, and they were really worried about their family back home. They would send money back to pay for their children’s school fees, for example.

But providing support and meeting the expectations of extended family members can sometimes be difficult. In some cases, the extended family wanted to help but could not because they had their own children to support, or because they had already taken in orphans from other families. Often they were under a lot of pressure already, with high levels of poverty.

There were sometimes tensions too in the community because the children were seen as 'out of place', heading households on their own. So there is a sort of harassment and stigma attached to that. So that could be difficult for young people to deal with.

So who (if anyone) has a responsibility to assist and support child-headed households?

In many cases, young people heading households do develop their own support networks with friends, relatives, neighbours and with community members and leaders, as well as NGO staff working in the area. So that provides vital support.

It can be anything from very informal support – going to stay with a neighbour when they feel threatened through violence or harassment. Or it could involve advocating for their inheritance rights – an NGO or community leader might do this.

In Tanzania, many communities are aware of the most vulnerable households. Local committees identify which households should receive support from funding that is available to support the most vulnerable children. So there are ways of the community identifying who is most in need and where the support should be targeted, although it is challenging to ensure the support reaches those who need it most.

Community members can offer a lot in terms of guidance and resolving conflict between siblings – this kind of emotional support is important as well as young people's practical everyday needs, such as going to school and gaining access to healthcare.

How did you approach your research?

In the first part of my research, I asked young people heading households about their lives and what their needs were – what they needed to sustain themselves in day-to-day life. Their answers could then be categorised into issues relating to food, health care, education, and so on. I later held workshops so that they could collectively rank those needs in terms of overall importance.

I wanted to share my initial findings with the young people and ask them to identify key messages from the research. So I decided to facilitate workshops that would enable the young people to express themselves more creatively – through drama, music and art. I had not tried this research method before so I did not really know whether it would work or not. Would the young people want to take part in drama or music or art?

Did they work? Did they give real geographical insight?

When I brought people together, it did work. Of course, in different places the workshop participants chose to do different things. In two places, the young people told their stories through a video-recorded drama. Elsewhere they created a rap song and art posters. I could then present these messages to community members and NGO workers in their locality and discuss how to respond to young people's priorities.

I think participatory workshops are an important research method for geographers, especially when working with children or in cases where people might have low levels of literacy. It can be a useful way of engaging with people. Ultimately, the workshops were used to check my initial research findings, as well as providing an opportunity to collect further qualitative data and to share the findings with the communities I had worked with.

And finally, why does AIDS have such a greater impact on the developing world?

The main difference is the healthcare and welfare system and the entitlements for support that we have in many developed countries. By contrast, in many contexts in sub-Saharan Africa, there is limited government welfare support available. Although access to medical treatment for HIV has increased rapidly in many countries in recent years, there is no income support or disability allowance that you might get in a UK context.

The cases I researched were reliant on informal family and community support mechanisms, as well as NGO support. But less than 10% of orphaned and vulnerable children in Africa who are in need of social protection or support from professionals actually receive external support. That is the real difference.

Ruth was interviewed in February 2013