“You see it, you know it, but you don’t say it” – Community based perceptions of HIV and AIDS testing, counselling and ARV treatment

Background:
Since its start at the end of 2007, the MSF OCG TB/HIV project in the Shiselweni Region has made significant progress in scaling up, in collaboration with the MoH, access to diagnosis, care and treatment for people with HIV infection or co-infected with HIV and TB, including MDR TB. But incidence levels of HIV infection and TB remain high in the whole of Swaziland, including the Shiselweni Region.

Whereas MSF’s HIV strategy has focused till now on treating people with advanced HIV/AIDS disease, there is an opportunity to push for a change of paradigms: treating HIV+ people for their own benefit well before they develop advanced HIV/AIDS but also for a community (public health) benefit by contributing to the reduction of new HIV infections in their respective communities. Yet this requires much greater community involvement for organizing community-based HIV testing and counseling, for supporting HIV+ people for their ART compliance, for organizing adapted
ART re-filling activities and all this supported by much more decentralized diagnostic services in health facilities enabling the monitoring of treatment compliance and response. There is also an opportunity to demonstrate the long term financial benefits for health care systems by treating HIV patients earlier.

Purpose/objective:
To develop a comprehensive analytical document that gives an insight into the local perception of HIV testing and AIDS treatment in the Shiselweni region and how to involve the communities for becoming active stakeholders in a “Treatment-as-Prevention
approach”.

Methodology:
Field research with qualitative interviews and observations..

Key findings:
Generally speaking and in contrast to what some medical personnel say, people have quite good knowledge about HIV and AIDS. People know how you can get it, how you can prevent it; they were able to enumerate signs and
symptoms, were informed of where you can go for a test and that treatment is available. But all the knowledge and awareness is of less importance when people live in a non-supportive environment and are still afraid of stigma – to be suspected of being HIV positive when seen by others going for a test or to be known as HIV positive person.

Testing is very much related to stigma. Testing itself would not be such a problem for some of the target groups, but most fear testing because they don’t want to be discovered by their peers. Going for an HIV test equals the suspicion being HIV positive. In terms of Swazi perception this is the same as being sick and having HIV which means AIDS and as aconsequence, HAVING to die.
When people were not tested or tested negative, they felt very much at risk and were afraid of an HIV infection and AIDS.
The willingness to go for a test increases with the person's state of health. Another of the study's findings is that people only go for a test when they feel critically ill or when they show severe signs and symptoms.
The group most reluctant to go for a test is youths. Middle-aged men are also very reluctant to go for an HIV test. Most respondents are women.

Everyone knows that treatment is available; only a few respondents ignored the fact that it would really help them. These same respondents were also the ones that refused or were reluctant to go for an HIV test. The difficulties arising in taking ARV treatment were that it is lifelong and that some people, even when they take treatment, still die.
In contrast answers to the perception of TB treatment differed very much. TB treatment is much more accepted simply because TB is curable and there is the prospect of the treatment's ending one day. In this respect it was also mentioned that TB is better because HIV is contracted through sex.

Recommendations:
A close collaboration with the communities is one of the prerequisites for an appropriate and accepted community based-approach and this collaboration needs to be strengthened. Within the communities a traditional and political structure has to be considered for any collaboration. The right person to talk to is the Indvuna (chief/headman) together with the Inner Council.

When it came to questions about where people would like to go for an HIV test or where they would ‘rather’ accept to go, answers were also quite uniform. In the first place the Gogo centers and NCP were mentioned. For youths, testing should take place at school. Mobile clinics were also often mentioned. Testing at work was also recommended by the respondents.
Door-to-door rapid blood testing for HIV was very much welcomed and seen as the best

Comments from the organisation, if any:
NA