Fear of stigma is prompting young South Africans to seek early HIV treatment

Young South Africans are strongly motivated to seek HIV testing and treatment by a desire to maintain a healthy physical appearance and to appear normal to other people, so as to avoid the stigma attached to HIV infection in their communities and peer groups, a qualitative study in South Africa has found.

The findings are published as an advance online publication in the journal AIDS & Behaviour.

The researchers say that “associating positive messaging about body image and general well-being with ART [antiretroviral therapy] use may be useful in expanding its uptake” among young adults. But, they also warn that the physical consequences of ART should not be used to promote its uptake at community level; this approach is likely to increase stigma, they argue.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

exclusion criteria

Defines who cannot take part in a research study. Eligibility criteria may include disease type and stage, other medical conditions, previous treatment history, age, and gender. For example, many trials exclude women who are pregnant, to avoid any possible danger to a baby, or people who are taking a drug that might interact with the treatment being studied.

test and treat

A public health strategy in which widespread HIV testing is facilitated and immediate treatment for those diagnosed with HIV is encouraged.

The study also found that a desire to achieve specific future goals, such as education or starting a family, also played an important part in motivating young adults to seek treatment.

South Africa recently moved to a 'test and treat' policy which enables everyone diagnosed with HIV to start treatment as soon as possible after diagnosis. Early treatment benefits individuals by reducing the risk of death and serious illness and benefits their sexual partners by preventing HIV transmission.

Encouraging otherwise healthy people to test for HIV remains a challenge, especially where the stigma associated with HIV infection is strong. Young adults in South Africa continue to acquire HIV at a high rate but are less likely to be on ART. In part, this is due to former guidelines that restricted treatment to people with more advanced HIV disease.

Understanding what motivates young people to take an HIV test and start treatment is important if more young people are to be reached, and if HIV incidence is to be reduced among young adults.

To learn more about the motivations of this age group, researchers carried out a qualitative study in the township of Gugulethu in young adults aged 18 to 35 who were starting ART. The study excluded women who were starting treatment during or immediately after pregnancy because pregnancy and prevention of transmission are likely to be important motivations in themselves.

The study recruited 25 people for in-depth interviews (19 women and 6 men with a median age of 28 years). These interviews explored motivations to seek HIV testing, their decision to start HIV treatment and barriers and facilitators to testing and treatment. Researchers then carried out a content analysis to identify the key themes and their influence on the decision to start ART.

The majority said that maintaining a healthy physical appearance was important for maintaining social acceptability and concealing their HIV status. This was a strong motivation for testing and for starting treatment.

"I felt it was better for me to know my status before anything, so that I can take ARVs if I’m HIV positive, so that I don’t become an open book even when I’m walking in the street.’’ (male, 26)

‘‘I didn’t want to see myself losing weight and I know it will be difficult to get my body back, and maybe I will end up losing my friends, and even to be recognized by anyone who sees me losing weight. I felt it was better for me to know my status before anything, so that I can take ARVs if I’m HIV positive, so that I don’t become an open book even when I’m walking in the street.’’ (male, 26)

 Another young woman said: 

‘‘there is life if I take treatment; I would be just like other people. No one in the township would see that I have HIV.”

‘‘there is life if I take treatment; I would be just like other people. No one in the township would see that I have HIV.” (female, 21)

 Some participants went further in their estimation of how ART could normalise or even enhance their social acceptability:

‘‘If you are [HIV] positive and taking your pills [ART]; they will say good things like how beautiful and robust or fat you are.’’ (female, 20)

Responsibility for family members and the desire to achieve educational and career goals were also important motivators. Easily accessible testing and HIV care services also made a difference to whether people considered testing and starting treatment.

This study found that stigma had a double-edged effect for most participants in this study. Although stigma was cited as a barrier to testing and treatment by some, avoiding stigma was also cited as a motivator for seeking testing and treatment.

The authors caution that their study is only able to show what motivated people who had chosen to start treatment. Further community-wide research is needed to explore the barriers for those who do not access HIV testing or treatment, the researchers say.

References

Lambert FR et al. Factors that motivated otherwise healthy HIV-positive young adults to access HIV testing and treatment in South Africa. AIDS Behav, advance online publication, February 2017.