Lived experiences of people living with HIV—A qualitative exploration on the manifestation, drivers, and effects of internalized HIV stigma within the Malawian context

Kumwenda, Moses; Kamkwamba, David Black; Chirwa, Maureen; Kasoka, Kasoka; Taegtmeyer, Miriam; Oraro-Lawrence, Tessa; Stackpool-Moore, Lucy

doi:10.1371/journal.pone.0284195

Cited by 3 publications

(1 citation statement)

References 50 publications

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“…In addition, working together provides space to confront myths, misconceptions and stereotypes about people living with HIV (PLHIV) thereby reducing HIV stigma. In Zimbabwe, participation in community groups facilitated linkage to HIV prevention, care and treatment services and was associated with lower levels of HIV stigma [22,23] (the adverse effects of stigma on uptake of HIV-related services, health outcomes and quality of life among PLHIV has been documented [24,25,26]). In cohesive communities, community members’ concern for good health extends beyond the individual to other members.…”

Section: Discussionmentioning

confidence: 99%

What role do community-level factors play in HIV self-testing uptake, linkage to services and HIV-related outcomes? A mixed methods study of community-led HIV self-testing programmes in rural Zimbabwe

Tumushime,

Ruhode,

Neuman

et al. 2024

Preprint

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Community-led interventions, where communities plan and lead implementation, are increasingly adopted in public health. We explore what factors may be associated with successful community-led distribution of HIV self-test (HIVST) kits to guide future service delivery. Twenty rural communities were supported to implement month-long HIVST kit distribution programmes from January-September/2019. Participant observation was conducted to document distribution models. Three months post-intervention, a population-based survey measured: self-reported new HIV diagnosis; self-reported HIVST uptake; self-reported linkage to post-test services; and viral load. The survey included questions for a composite measure of ‘community cohesion’. Communities were grouped into low/medium/high based on community cohesion scores. We used mixed effect logistic regression to assess how outcomes differed by community cohesion. In total, 27,812 kits were distributed by 348 distributors. Two kit distribution models were implemented: door-to-door distribution only or distribution at venues/events within communities. Of 5,683 participants surveyed, 1,831 (32.2%) received kits and 1,229 (67.1%) reported using it; overall HIVST uptake was 1,229/5,683 (21.6%). Self-reported new HIV diagnosis increased with community cohesion, from 32/1,770 (1.8%) in the lowest cohesion group to 40/1,871 (2.1%) in the medium group, adjusted odds ratio (aOR) 2.94 (1.41-6.12, p=0.004) and 66/2,042 (3.2%) in the highest cohesion group, aOR 7.20 (2.31-22.50, p=0.001). Other outcomes did not differ by extent of cohesion. HIVST kit distribution in high-cohesion communities was associated with seven times higher odds of identifying people with new HIV diagnoses, suggesting more cohesive communities may better identify those most at risk of undiagnosed HIV. Communities can learn from and adopt these participatory community-led approaches to intervention planning and implementation, which may foster cohesion and benefit public health programmes.

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Section: Discussionmentioning

confidence: 99%

What role do community-level factors play in HIV self-testing uptake, linkage to services and HIV-related outcomes? A mixed methods study of community-led HIV self-testing programmes in rural Zimbabwe

Tumushime,

Ruhode,

Neuman

et al. 2024

Preprint

Self Cite

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Stigma and discrimination faced by adolescents living with HIV and experiencing depression in Malawi

Faidas,

Stockton,

Mphonda

et al. 2024

BMC Global Public Health

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Background In Malawi, approximately 25% of adolescents living with HIV (ALWH) also suffer from depression. Not only is HIV stigma a major contributor to depression but it also adversely impacts HIV care engagement. ALWH can experience HIV stigma as stereotyping, social exclusion, low social support, and abuse, and these experiences are associated with poor mental health. Despite recognition of the deleterious effects of HIV stigma, we have limited knowledge of how stigma is experienced by ALWH with comorbid depression. Guided by the Health Stigma and Discrimination Framework, we describe stigma faced by ALWH and comorbid depression in Malawi and its implications for future interventions. Methods As part of a larger formative study to adapt a mental health counseling intervention, we conducted in-depth interviews, social support mapping sessions, and focus-group discussions with 25 ALWH, 4 caregivers of ALWH, 3 HIV providers, and 5 participants and 5 staff of a prior mental health counseling intervention. After analyzing the stigma codes, we used the Health Stigma and Discrimination Framework to organize the data into four key domains: drivers, manifestations, outcomes, and health and social impacts. Results Major drivers of HIV stigma included fear of HIV transmission, negative effects of antiretroviral therapy (ART), association with death, inaccurate knowledge, and negative attitudes towards ALWH. The most common manifestations of HIV stigma were gossip, insults and mocking, and physical and social distancing. Decreased ART adherence and missed HIV appointments were commonly cited outcomes of HIV stigma. Broader health impacts of HIV stigma were notable for mental health comorbidities including depression, anxiety, substance use, and suicidality. Identified resilience strategies included support for HIV care engagement and psychosocial support from family and friends. Conclusions This study systematically describes the stigmatization process faced by ALWH and experiencing depressive symptoms in Malawi. Notably, HIV stigma continues to disrupt HIV care and detrimentally impacts mental health during adolescent development. Further studies focused specifically on stigma are needed to better characterize this process and identify additional resilience factors. Investment in stigma-reduction interventions for ALWH is needed to avert poor mental health and HIV outcomes.

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An Open Letter on Advancing HIV prevention: Augmenting an ecosystem-based approach to understand prevention decision-making

Gantayat,

Baer,

Gangaramany

et al. 2024

Gates Open Res

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In the last two decades, HIV programs have been able to avert millions of AIDS-related deaths and reduce HIV incidence. However, the 1.3 million new HIV infections in 2022 remain significantly above the UNAIDS target of fewer than 370,000 new infections by 2025. HIV programs worldwide also did not achieve the UN’s 90-90-90 target for testing and treatment set for 2020. Within this broader picture, HIV continues to disproportionately affect key and at-risk populations, including gay men and other men who have sex with men, female sex workers, and adolescent girls and young women. As HIV incidence declines and biomedical advances continue, it will become critical for public-health practitioners to reach key and at-risk populations with prevention services and limit primary transmission. In this Open Letter, we focus on demand for HIV prevention to illuminate factors that influence uptake of HIV prevention products and services. These factors exist at three levels of the decision-making ecosystem – the individual level, interaction level and systemic level. We argue that approaching HIV prevention solely through the lens of these levels creates a static view of prevention decision-making. There is a need instead for a dynamic viewpoint that can mirror the changing contexts in which users find themselves and make prevention decisions. We demonstrate that the current ecosystem viewpoint is useful to understand the gaps that exist in program implementation, but does not provide adequate insights into the underlying behaviors that contribute to these gaps. To address this, we suggest an approach to include dynamic aspects of decision-making with factors that influence the individual’s assessment of risk, their evaluation of the opportunities to use HIV prevention, and their effective use of prevention products.

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Lived experiences of people living with HIV—A qualitative exploration on the manifestation, drivers, and effects of internalized HIV stigma within the Malawian context

Cited by 3 publications

References 50 publications

What role do community-level factors play in HIV self-testing uptake, linkage to services and HIV-related outcomes? A mixed methods study of community-led HIV self-testing programmes in rural Zimbabwe

What role do community-level factors play in HIV self-testing uptake, linkage to services and HIV-related outcomes? A mixed methods study of community-led HIV self-testing programmes in rural Zimbabwe

Stigma and discrimination faced by adolescents living with HIV and experiencing depression in Malawi

An Open Letter on Advancing HIV prevention: Augmenting an ecosystem-based approach to understand prevention decision-making

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