HIV-related stigma has increased in Uganda despite treatment roll-out

HIV continues to be stigmatised despite increased access to antiretroviral therapy (ART), according to research from Uganda published in the online edition of AIDS. Levels of internalised stigma among people starting ART increased between 2007 and 2012. There was also an increase in the proportion of individuals in the general public who said they expected people with HIV to experience stigma.

“We observed an increase over time in internalized stigma among PLHIV [people living with HIV] initiating ART,” comment the authors. “During the same time period, we observed that a significantly higher percentage of people in the general population endorsed fears about disclosure…our findings suggest that the expansion of ART alone may be insufficient to reduce HIV-related stigma and that further targeted efforts to counter stigma are necessary.”

Access to ART has increased in middle-income and resource-limited countries in recent years. It has been suggested that further roll-out of ART will reduce levels of HIV-associated stigma in these settings. However, it is not clear whether this is the case.

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.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

middle income countries

The World Bank classifies countries according to their income: low, lower-middle, upper-middle and high. There are around 50 lower-middle income countries (mostly in Africa and Asia) and around 60 upper-middle income countries (in Africa, Eastern Europe, Asia, Latin America and the Caribbean).

An international team of investigators therefore designed a study to examine levels of internalised stigma among people starting ART in rural Uganda between 2007 and 2012. They also measured levels of HIV-related stigma and anticipated stigma in the general population in Uganda during approximately the same time period (2006 to 2011).

A total of 329 HIV-positive adult patients (70% women) were recruited to the study. Levels of internalised stigma were assessed using the Internalized AIDS-Related Stigma Scale. This has previously been shown to have good reliability in Uganda. Questions examined concerns about disclosure and assessed feelings of shame/self-loathing.

Mean stigma scores increased from 1.4 in 2007 to 1.8 in 2012. This increase was significant. Year-on-year, the internalised stigma score increased by 11%. Adjustment for demographic characteristics had little impact on this finding.

The study of stigmatising attitudes in the general population involved 1141 participants in 2006 and 1106 in 2011.

Overall, participants in 2011 were more likely to have accepting attitudes towards HIV (59 vs 46%, p < 0.001).

However, in 2011 a higher proportion stated that they would expect people living with HIV to experience stigma when disclosing their status (61 vs 47%, p < 0.001).

The investigators offer two suggestions for this apparent disparity in their findings. First they suggest that answers about feelings of stigma towards HIV may have been affected by social desirability – participants provided researchers with the answers they thought they ought to. Alternatively, the authors suggest that attitudes towards HIV genuinely had changed among the study participants, but they perceived that the attitudes of others in their society had not.

“Despite the growing availability of ART, which has allowed increasing numbers of PLHIV to restore physical health and rehabilitate economically and socially…stigma remains highly prevalent and may have increased,” conclude the investigators. “Our findings underscore the need to better understand reasons for persistent stigma in the era of ART expansion and more effective methods to reduce stigma among PLHIV and in the general population.”

References

Chan BT et al. Persistent HIV-related stigma in rural Uganda during a period of increasing HIV incidence despite treatment expansion. AIDS 28, online edition. DOI: 10.1097/QAD.0000000000000495 (2014).