Networking people with HIV/AIDS


by Roger Drew.

If you talk to people working on HIV and AIDS or read the things they write, it is not long before you come across the word networking. What exactly does it mean? A simple definition might be coming together with other individuals or groups to benefit each other.

Why come together?

Why is it that people with HIV/AIDS feel the need to come together with other people in some form of group or network? There are many possible reasons. Some of these include:

Psychological/emotional/spiritual support
Finding out that you are infected with HIV can be a great shock – coming together with other people who are HIV positive can be very supportive.

Feeling of belonging Many people with HIV experience feelings of rejection and isolation. Joining with other people with HIV can provide a safe space in which they feel accepted and welcome.

Access to information Groups of people living with HIV may have greater access to information (eg: on latest treatments or alternative therapies) than individuals on their own.

Access to resources Many people with HIV experience poverty. They may feel that belonging to a group will enable them to gain access to the resources they need.

Opportunities for self-help Many groups of people living with HIV seek to tackle experiences of poverty through self-help initiatives. These might include credit schemes, income-generating efforts and training.

What stops people coming together?

Most people living with HIV/AIDS in the world are not part of a formal network. Why is this? Some reasons include:

Most people with HIV do not know they are infected In many parts of the world, there is little or no access to HIV testing. People may not want to be tested for fear of being discriminated against.

Desire for secrecy Because many societies have negative attitudes towards people with HIV, people who find that they are infected with HIV may want to keep this secret.

Lack of knowledge People may not know what groups exist or what services they offer.

Other commitments People with HIV may be part of other existing groups. Similarly, they may have other commitments – such as employment – which mean they are unable to participate in certain groups.

Other networks

Networks did not start with HIV. Many existed long before the epidemic started, such as networks of women’s groups, farmer organisations and church groups. They already meet many of the needs mentioned earlier. Because of the negative attitudes associated with HIV in many societies, some people believe that strengthening such existing groups may provide more support to people living with HIV than forming specific new groups. However, existing groups may find it difficult to encourage open discussion about HIV during meetings, even if existing members are willing to welcome new members with HIV. This will mean that support specific to the infection will be lacking.

Other networks may focus on specific issues. For example, groups are being formed for widows and orphans, whatever the cause of death. In places where the HIV/AIDS epidemic is very severe, it is likely that many people in these groups will be HIV positive. Another approach is to form groups for a specific purpose – eg: credit unions for single women. Again, in areas where HIV is common, these will include many people who are HIV positive.

Roger Drew has worked for many years with FACT in Zimbabwe. He is now Director of Healthlink Worldwide, Cityside, 40 Adler Street, London, E1 1EE, UK Fax +44 207 539 1580 E-mail: