Linking HIV stigma, denial and poor health 

07 November 2018

People living with HIV who stigmatise and think negatively about themselves because of their HIV status are less likely to start treatment and reach viral load suppression. 

Man waiting to test for HIV

People living with HIV who internalise stigma are more likely to avoid dealing with their status, meaning they are less likely to start treatment or achieve viral suppression if they do make it into care.

Research on people living with HIV in the South African townships of Soweto and Gugulethu found significant, indirect associations between internalised stigma, non-initiation of antiretroviral treatment (ART) and unsuppressed viral loads, connected by the presence of avoidance tactics such as denial, disengagement and substance use.

In South Africa, only 61% of the 7.2 million people living with HIV were on ART in 2017 and only 47% had suppressed viral loads. It is estimated that 43% of people living with HIV in the country experience internalised stigma, which is increasingly being recognised as a barrier to treatment among people living with HIV. 

Researchers tracked 398 people living with HIV between 2014 and 2015 at specific points in time. The average age of participants was 36 and 63% identified as female. Correlations between the presence of internalised stigma a week after HIV diagnosis, avoidance behaviours at three months, ART initiation at six months, and viral suppression at nine months were examined.

Previous studies have found a connection between internalised stigma and poor treatment initiation but much of this research has been based on data collected at a single point in time. What makes this study significant is that researchers were able to identify associations between stigma and treatment, plus any indirect links between these associations, in the lives of the same people as they moved through their HIV treatment journey.

Internalised stigma was measured using the Internalized AIDS-Related Stigma Scale, which asks participants to agree or disagree with statements relating to feelings of shame, worthlessness, guilt and dirtiness. Avoidance tactics (also known as avoidant coping) were measured in relation to factors such as self-distraction, denial, substance use, disengagement, venting and self-blame.

Researchers analysed the data in two ways. The first tested associations between internalised stigma, avoidant coping and ART initiation, and the second tested associations between internalised stigma, avoidant coping and viral suppression.

In both models, internalised stigma one week after diagnosis was associated with avoidant coping at three months. In turn, avoidant coping at three months was associated with a lower likelihood of ART initiation at six months in the first model and a lower likelihood of viral suppression at nine months in the second model. 

This suggests people living with HIV who internalise stigma may engage in efforts to avoid, deny and distract themselves from their status, which in turn reduces the likelihood they will begin treatment or, if they do begin treatment, will reduce the likelihood that treatment will be effective enough to result in viral suppression. 

The findings indicate that immediate support is needed after someone is diagnosed with HIV to specifically address the issue of internalised stigma and ensure the coping strategies someone adopts to deal with their positive status do not have a detrimental impact on their health and well-being. 

Cognitive therapies that encourage people to seek support is one route to improving coping strategies, while livelihood interventions that enhance economic empowerment, and those that focus on people’s pride and self-esteem, may be effective in dealing with internalised stigma. 

Written by Hester Phillips