Pathways for reduction of HIV‐related stigma: a model derived from longitudinal qualitative research in Kenya and Uganda

Abstract

Introduction The rollout of antiretroviral therapy (ART) has been associated with reductions in HIV‐related stigma, but pathways through which this reduction occurs are poorly understood. In the newer context of universal test and treat (UTT) interventions, where rapid diffusion of ART uptake takes place, there is an opportunity to understand the processes through which HIV‐related stigma can decline, and how UTT strategies may precipitate more rapid and widespread changes in stigma. This qualitative study sought to evaluate how a UTT intervention influenced changes in beliefs, attitudes and behaviours related to HIV. Methods Longitudinal qualitative in‐depth semi‐structured interview data were collected within a community‐cluster randomized UTT trial, the Sustainable East Africa Research in Community Health (SEARCH) study, annually over three rounds (2014 to 2016) from two cohorts of adults (n = 32 community leaders, and n = 112 community members) in eight rural communities in Uganda and Kenya. Data were inductively analysed to develop new theory for understanding the pathways of stigma decline. Results We present an emergent theoretical model of pathways through which HIV‐related stigma may decline: internalized stigma may be reduced by two processes accelerated through the uptake and successful usage of ART: first, a reduced fear of dying and increased optimism for prolonged and healthy years of life; second, a restoration of perceived social value and fulfilment of subjective role expectations via restored physical strength and productivity. Anticipated stigma may be reduced in response to widespread engagement in HIV testing, leading to an increasing number of HIV status disclosures in a community, “normalizing” disclosure and reducing fears. Improvements in the perceived quality of HIV care lead to people living with HIV (PLHIV) seeking care in nearby facilities, seeing other known community members living with HIV, reducing isolation and facilitating opportunities for social support and “solidarity.” Finally, enacted stigma may be reduced in response to the community viewing the healthy bodies of PLHIV successfully engaged in treatment, which lessens the fears that trigger enacted stigma; it becomes no longer socially normative to stigmatize PLHIV. This process may be reinforced through public health messaging and anti‐discrimination laws. Conclusions Declines in HIV‐related stigma appear to underway and explained by social processes accelerated by UTT efforts. Widespread implementation of UTT shows promise for reducing multiple dimensions of stigma, which is critical for improving health outcomes among PLHIV.

Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial

“…Finally, this study relied on cross-sectional analysis of baseline data and therefore did not explore changes in forms of stigma in these communities over time. Recent research in the study setting involving analysis of data collected at multiple time points has suggested changes in stigma did occur, suggesting pathways through which stigma can decline in the context of rapid uptake of HIV testing and treatment [33,56].…”

Changes over time in HIV testing and counselling uptake and associated factors among youth in Zambia: a cross-sectional analysis of demographic and health surveys from 2007 to 2018

“…The negative impact of stigma has been noted by several other authors and remains a challenge for any HIV program [ 75 , 76 ]. However, it should be recognized that the scaling up of HIV prevention and treatment services, especially in a universal ‘test and treat’ approach, could help reduce HIV-related stigma in the community through several pathways and improve access to these services [ 77 , 78 ]. We also found strong evidence of higher odds of HIV testing among the most educated women, consistent with other studies on youth in the SSA region [ 21 , 33 , 59 ].…”

“Honestly, this problem has affected me a lot”: A qualitative exploration of the socioeconomic impacts of chronic respiratory disease among people and their communities in Sudan and Tanzania

“…Words also matter and consistent use of terms like 'people who have asthma' rather than asthma 'victims' or CRD 'sufferers' can start to shift mindsets. There are many transferable lessons to be learned from community de-stigmatisation efforts with HIV in the antiretroviral therapy era (25) and, more recently, efforts being applied to COVID-19 related stigma (26).…”