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

Carol S Camlin, Edwin D Charlebois, Monica Getahun, Cecilia Akatukwasa, Frederick Atwine, Harriet Itiakorit, Robert Bakanoma, Irene Maeri, Lawrence Owino, Anjeline Onyango, Gabriel Chamie, Tamara D Clark, Craig R Cohen, Dalsone Kwarisiima, Jane Kabami, Norton Sang, Moses R Kamya, Elizabeth A Bukusi, Maya L Petersen, Diane V Havlir, Carol S Camlin, Edwin D Charlebois, Monica Getahun, Cecilia Akatukwasa, Frederick Atwine, Harriet Itiakorit, Robert Bakanoma, Irene Maeri, Lawrence Owino, Anjeline Onyango, Gabriel Chamie, Tamara D Clark, Craig R Cohen, Dalsone Kwarisiima, Jane Kabami, Norton Sang, Moses R Kamya, Elizabeth A Bukusi, Maya L Petersen, Diane V Havlir

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.

Trial registration: ClinicalTrials.gov NCT01864603.

Keywords: HIV testing; HIV treatment; HIV-related stigma; Universal Testing and Treatment; community; sub-Saharan Africa.

© 2020 The Authors. Journal of the International AIDS Society published by John Wiley & Sons Ltd on behalf of the International AIDS Society.

Figures

Figure 1
Figure 1
Map of communities participating in the Sustainable East Africa Research in Community Health (SEARCH) study.
Figure 2
Figure 2
The Pathways Model for HIV‐Related Stigma Reduction. Text in red denotes thematic linkage: Wider uptake and successful usage of ART acted to reduce forms of both internalized and enacted stigma via multiple pathways. ART, Antiretroviral therapy; PLHIV, People living with HIV

References

    1. Chan BT, Tsai AC, Siedner MJ. HIV treatment scale‐up and HIV‐related stigma in Sub‐Saharan Africa: a longitudinal cross‐country analysis. Am J Public Health. 2015;105(8):1581–7.
    1. Chan BT, Tsai AC. HIV stigma trends in the general population during antiretroviral treatment expansion: analysis of 31 countries in sub‐Saharan Africa, 2003–2013. J Acquir Immune Defic Syndr. 2016;72(5):558–64.
    1. Wolfe WR, Weiser SD, Leiter K, Steward WT, Percy‐de Korte F, Phaladze N, et al. The impact of universal access to antiretroviral therapy on HIV stigma in Botswana. Am J Public Health. 2008;98(10):1865–71.
    1. Roura M, Urassa M, Busza J, Mbata D, Wringe A, Zaba B. Scaling up stigma? The effects of antiretroviral roll‐out on stigma and HIV testing. Early evidence from rural Tanzania. Sex Transm Infect. 2009;85(4):308–12.
    1. Tsai AC, Bangsberg DR, Bwana M, Haberer JE, Frongillo EA, Muzoora C, et al. How does antiretroviral treatment attenuate the stigma of HIV? Evidence from a cohort study in rural Uganda. AIDS Behav. 2013;17(8):2725–31.
    1. Maughan‐Brown B. Stigma rises despite antiretroviral roll‐out: a longitudinal analysis in South Africa. Soc Sci Med. 2010;70(3):368–74.
    1. Campbell C, Skovdal M, Madanhire C, Mugurungi O, Gregson S, Nyamukapa C. "We, the AIDS people": how antiretroviral therapy enables Zimbabweans living with HIV/AIDS to cope with stigma. Am J Public Health. 2011;101(6):1004–10.
    1. Maman S, van Rooyen H, Stankard P, Chingono A, Muravha T, Ntogwisangu J, et al. NIMH Project Accept (HPTN 043): results from in‐depth interviews with a longitudinal cohort of community members. PLoS One. 2014;9:e87091.
    1. Sullivan MC, Rosen AO, Allen A, Benbella D, Camacho G, Cortopassi AC, et al. Falling short of the First 90: HIV stigma and HIV testing research in the 90–90–90 Era. AIDS Behav. 2020;24(2):357–62.
    1. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice‐Hall; 1963.
    1. Link BG, Phelan JC. Conceptualizing stigma. Ann Rev Sociol. 2001;27(1):363–85.
    1. Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160–77.
    1. Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24(6):518–29.
    1. Holzemer WL, Uys LR, Chirwa ML, Greeff M, Makoae LN, Kohi TW, et al. Validation of the HIV/AIDS Stigma Instrument—PLWA (HASI‐P). AIDS Care. 2007;19(8):1002–12.
    1. Kalichman SC, Simbayi LC, Cloete A, Mthembu PP, Mkhonta RN, Ginindza T. Measuring AIDS stigmas in people living with HIV/AIDS: the Internalized AIDS‐Related Stigma Scale. AIDS Care. 2009;21(1):87–93.
    1. Parker R, Aggleton P. HIV and AIDS‐related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13–24.
    1. Hatzenbuehler M, Link BG. Introduction to the special issue on structural stigma and health. Soc Sci Med. 2014;103:1–6.
    1. Turan B, Hatcher AM, Weiser SD, Johnson MO, Rice WS, Turan JM. Framing mechanisms linking HIV‐related stigma, adherence to treatment, and health outcomes. Am J Public Health. 2017;107(6):863–9.
    1. Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well‐being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013;17(5):1785–95.
    1. Ferris France N, Macdonald SH, Conroy RR, Chiroro P, Ni Cheallaigh D, Nyamucheta M, et al. 'We are the change' ‐ An innovative community‐based response to address self‐stigma: a pilot study focusing on people living with HIV in Zimbabwe. PLoS One. 2019;14:e0210152.
    1. Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. 2003;15(1):49–69.
    1. Thapa S, Hannes K, Cargo M, Buve A, Aro AR, Mathei C. Building a conceptual framework to study the effect of HIV stigma‐reduction intervention strategies on HIV test uptake: a scoping review. J Assoc Nurses AIDS Care. 2017;28(4):545–60.
    1. Thapa S, Hannes K, Cargo M, Buve A, Peters S, Dauphin S, et al. Stigma reduction in relation to HIV test uptake in low‐ and middle‐income countries: a realist review. BMC Public Health. 2018;18(1):1277.
    1. Timmermans S, Tavory I. Theory construction in qualitative research: from grounded theory to abductive analysis. Sociol Theory. 2012;30(3):167–86.
    1. Chamie G, Clark TD, Kabami J, Kadede K, Ssemmondo E, Steinfeld R, et al. A hybrid mobile approach for population‐wide HIV testing in rural east Africa: an observational study. Lancet HIV. 2016;3(3):e111–9.
    1. Havlir DV, Balzer LB, Charlebois ED, Clark TD, Kwarisiima D, Ayieko J, et al. HIV testing and treatment with the use of a community health approach in rural Africa. N Engl J Med. 2019;381(3):219–29.
    1. Petersen M, Balzer L, Kwarsiima D, Sang N, Chamie G, Ayieko J, et al. Association of implementation of a universal testing and treatment intervention with HIV diagnosis, receipt of antiretroviral therapy, and viral suppression in East Africa. J Am Med Assoc. 2017;317(21):2196–206.
    1. Charmaz K. Constructing grounded theory, 2nd edn Thousand Oaks, CA: Sage Publications, Inc.; 2014.
    1. Muhr T. ATLAS.ti software, 6th edn Berlin: Scientific Software; 2010.
    1. Hargreaves JR, Stangl A, Bond V, Hoddinott G, Krishnaratne S, Mathema H, et al. HIV‐related stigma and universal testing and treatment for HIV prevention and care: design of an implementation science evaluation nested in the HPTN 071 (PopART) cluster‐randomized trial in Zambia and South Africa. Health Policy Plan. 2016;31(10):1342–54.
    1. Camlin CS, Charlebois ED, Geng E, Semitala F, Wallenta J, Getahun M, et al. Redemption of the "spoiled identity:" the role of HIV‐positive individuals in HIV care cascade interventions. J Int AIDS Soc. 2017;20:e25023.
    1. Roura M, Wringe A, Busza J, Nhandi B, Mbata D, Zaba B, et al. "Just like fever": a qualitative study on the impact of antiretroviral provision on the normalisation of HIV in rural Tanzania and its implications for prevention. BMC Int Health Human Rights. 2009;9:22.
    1. Mall S, Middelkoop K, Mark D, Wood R, Bekker LG. Changing patterns in HIV/AIDS stigma and uptake of voluntary counselling and testing services: the results of two consecutive community surveys conducted in the Western Cape, South Africa. AIDS Care. 2013;25(2):194–201.
    1. Gilbert L, Walker L. "They (ARVs) are my life, without them I'm nothing"–experiences of patients attending a HIV/AIDS clinic in Johannesburg, South Africa. Health Place. 2009;15(4):1123–9.
    1. Zuch M, Lurie M. 'A virus and nothing else': the effect of ART on HIV‐related stigma in rural South Africa. AIDS Behav. 2012;16(3):564–70.
    1. Tsai AC, Hatcher AM, Bukusi EA, Weke E, Lemus Hufstedler L, Dworkin SL, et al. A livelihood intervention to reduce the stigma of HIV in rural kenya: longitudinal qualitative study. AIDS Behav. 2017;21(1):248–60.
    1. Bonnington O, Wamoyi J, Ddaaki W, Bukenya D, Ondenge K, Skovdal M, et al. Changing forms of HIV‐related stigma along the HIV care and treatment continuum in sub‐Saharan Africa: a temporal analysis. Sex Transm Infect. 2017;93 Suppl 3:e052975.
    1. Mbonye M, Nakamanya S, Birungi J, King R, Seeley J, Jaffar S. Stigma trajectories among people living with HIV (PLHIV) embarking on a life time journey with antiretroviral drugs in Jinja, Uganda. BMC Public Health. 2013;13:804.
    1. Camlin CS, Ssemmondo E, Chamie G, El Ayadi AM, Kwarisiima D, Sang N, et al. Men "missing" from population‐based HIV testing: insights from qualitative research. AIDS Care. 2016;28 Suppl 3:67–73.
    1. Maeri I, El Ayadi A, Getahun M, Charlebois E, Akatukwasa C, Tumwebaze D, et al. "How can I tell?" Consequences of HIV status disclosure among couples in eastern African communities in the context of an ongoing HIV "test‐and‐treat" trial. AIDS Care. 2016;28 Suppl 3:59–66.

Source: PubMed

3
Subskrybuj