How the Term 'Self-Management' is Used in HIV Research in Low- and Middle-Income Countries: A Scoping Review.

This scoping review assessed how the term 'self-management' (SM) is used in peer-reviewed literature describing HIV populations in low- and middle-income countries (LMIC). This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. OVID Medline, Embase, CAB Abstracts, and EBSCO CINAHL, Scopus, and Cochrane Library were searched up to September 2021 for articles with SM in titles, key words, or abstracts. Two team members independently screened the titles and abstracts, followed by the full-text. A data extraction tool assisted with collecting findings. A total of 103 articles were included. Since 2015, there has been a 74% increase in articles that use SM in relation to HIV in LMIC. Fifty-three articles used the term in the context of chronic disease management and described it as a complex process involving active participation from patients alongside providers. Many of the remaining 50 articles used SM as a strategy for handling one's care by oneself, with or without the help of community or family members. This demonstrates the varied conceptualizations and uses of the term in LMIC, with implications for the management of HIV in these settings. Future research should examine the applicability of SM frameworks developed in high-income settings for LMIC.

Universal HIV testing and treatment and HIV stigma reduction: a comparative thematic analysis of qualitative data from the HPTN 071 (PopART) trial in South Africa and Zambia.

Despite continued development of effective HIV treatment, expanded access to care and advances in prevention modalities, HIV-related stigma persists. We examine how, in the context of a universal HIV-testing and treatment trial in South Africa and Zambia, increased availability of HIV services influenced conceptualisations of HIV. Using qualitative data, we explore people's stigma-related experiences of living in 'intervention' and 'control' study communities. We conducted exploratory data analysis from a qualitative cohort of 150 households in 13 study communities, collected between 2016 and 2018. We found that increased availability of HIV-testing services influenced conceptualisations of HIV as normative (non-exceptional) and the visibility of people living with HIV (PLHIV) in household and community spaces impacted opportunities for stigma. There was a shift in community narratives towards individual responsibility to take up (assumingly) widely available service - for PLHIV to take care of their own health and to prevent onward transmission. Based on empirical data, we show that, despite a growing acceptance of HIV-related testing services, anticipated stigma persists through the mechanism of shifting responsibilisation. To mitigate the responsibilisation of PLHIV, heath implementers need to adapt anti-stigma messaging and especially focus on anticipated stigma.

Community-based health workers implementing universal access to HIV testing and treatment: lessons from South Africa and Zambia-HPTN 071 (PopART).

The global expansion of HIV testing, prevention and treatment services is necessary to achieve HIV epidemic control and promote individual and population health benefits for people living with HIV (PLHIV) in sub-Saharan Africa. Community-based health workers (CHWs) could play a key role in supporting implementation at scale. In the HPTN 071 (PopART) trial in Zambia and South Africa, a cadre of 737 study-specific CHWs, working closely with government-employed CHW, were deployed to deliver a 'universal' door-to-door HIV prevention package, including an annual offer of HIV testing and referral services for all households in 14 study communities. We conducted a process evaluation using qualitative and quantitative data collected during the trial (2013-2018) to document the implementation of the CHW intervention in practice. We focused on the recruitment, retention, training and support of CHWs, as they delivered study-specific services. We then used these descriptions to: (i) analyse the fidelity to design of the delivery of the intervention package, and (ii) suggest key insights for the transferability of the intervention to other settings. The data included baseline quantitative data collected with the study-specific CHWs (2014-2018); and qualitative data from key informant interviews with study management (n = 91), observations of CHW training events (n = 12) and annual observations of and group discussions (GD) with intervention staff (n = 68). We show that it was feasible for newly recruited CHWs to implement the PopART intervention with good fidelity, supporting the interpretation of the trial outcome findings. This was despite some challenges in managing service quality and CHW retention in the early years of the programme. We suggest that by prioritizing the adoption of key elements of the in-home HIV services delivery intervention model-including training, emotional support to workers, monitoring and appropriate remuneration for CHWs-these services could be successfully transferred to new settings.

Antiretroviral therapy in Zambia: colours, 'spoiling', 'talk' and the meaning of antiretrovirals.

We examine responses to the roll-out of antiretroviral drugs (ARVs) in Zambia in 2004, focusing on material features of the drugs (colour, shape, size, origin), 'spoiling' (concern about toxicity, side effects of the drugs) and rumours ('talk' about the drugs). Data consists of interviews with 10 people living with HIV and 21 healthcare practitioners. We found that the colour symbolism of 'traditional medicine' has some influence on ideas about ARVs, suggesting possible 'meaning responses' that could affect treatment outcomes. Respondents also become concerned when colours, shapes and side effects differ from expectations. 'Talk' about ARVs concerns risks of medication, sustainability of treatment programmes and people's feelings of vulnerability within larger socio-economic contexts in which countries like Zambia are disadvantaged. Understanding the associations that pharmaceuticals evoke can improve treatment programmes by elucidating public and patient concerns and sensitising healthcare professionals to the historical and political circumstances that condition the 'meaning' of ARVs.

'Are We Not Human?' Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services.

BACKGROUND: The advent of anti-retroviral therapy (ART) in Southern Africa holds the promise of shifting the experience of HIV toward that of a manageable chronic condition. However, this potential can only be realized when persons living with HIV are able to access services without barriers, which can include stigma. Our qualitative study explored experiences of persons living with disabilities (PWD) in Lusaka, Zambia who became HIV-positive (PWD/HIV+). METHODS AND FINDINGS: We conducted interviews with 32 participants (21 PWD/HIV+ and 11 key informants working in the fields of HIV and/or disability). Inductive thematic analysis of interview transcripts was informed by narrative theory. Participants' accounts highlighted the central role of stigma experienced by PWD/HIV+, with stigmatizing attitudes closely linked to prevailing societal assumptions that PWD are asexual. Seeking diagnostic and treatment services for HIV was perceived as evidence of PWD being sexually active. Participants recounted that for PWD/HIV+, stigma was enacted in a variety of settings, including the queue for health services, their interactions with healthcare providers, and within their communities. Stigmatizing accounts told about PWD/HIV+ were described as having important consequences. Not only did participants recount stories of internalized stigma (with its damaging effects on self-perception), but also that negative experiences resulted in some PWD preferring to "die quietly at home" rather than being subjected to the stigmatizing gaze of others when attempting to access life-preserving ART. Participants recounted how experiences of stigma also affected their willingness to continue ART, their willingness to disclose their HIV status to others, as well as their social relations. However, participants also offered counter-stories, actively resisting stigmatizing accounts and portraying themselves as resilient and resourceful social actors. CONCLUSIONS: The study highlights a significant barrier to healthcare experienced by PWD/HIV+, with important implications for the future design and equitable delivery of HIV services in Zambia. Stigma importantly affects the abilities of PWD/HIV+ to manage their health conditions.

Perceptions of HIV-related health services in Zambia for people with disabilities who are HIV-positive.

INTRODUCTION: Despite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV-positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV-related health services for PWDs who are also living with HIV in Lusaka, Zambia. METHODS: This qualitative, interpretive study involved in-depth, semi-structured, one-on-one interviews with two groups of participants in Lusaka, Zambia: 21 PWDs who had become HIV-positive, and 11 people working in HIV and/or disability. PWDs had physical, hearing, visual and/or intellectual impairments. Interviews were conducted in English, Nyanja, Bemba or Zambian sign language. Descriptive and thematic analyses were conducted by a multidisciplinary, international research team. RESULTS: Participants described their experiences with HIV-related health services in terms of the challenges they faced. In particular, they encountered three main challenges while seeking care and treatment: (1) disability-related discrimination heightened when seeking HIV services, (2) communication barriers and related concerns with confidentiality, and (3) movement and mobility challenges related to seeking care and collecting antiretroviral therapy. These experiences were further shaped by participants' profound concerns about poverty and unmet basic needs. DISCUSSION: This study demonstrates how PWDs who are HIV-positive have the same HIV care, treatment and support needs as able-bodied counterparts, but face avoidable barriers to care. Many challenges mirror concerns identified with HIV prevention, suggesting that efforts to promote inclusion and reduce stigma could have widespread benefits. CONCLUSIONS: Despite the growing body of literature on increased risk of exposure to HIV among HIV-negative PWDs, this is the first published study to examine perceptions of testing, treatment and other HIV services for PWDs who have become HIV-positive. Findings reveal far-reaching opportunities for improving the quality of care for this population.

High levels of vulnerability and anticipated stigma reduce the impetus for tuberculosis diagnosis in Cape Town, South Africa.

Prolonged diagnostic and treatment delays, particularly in settings experiencing concomitant human immunodeficiency virus (HIV) and tuberculosis (TB) epidemics, undermine global TB control efforts. Current TB control policy in South Africa, as organized through the National TB Control Programme (NTP), relies on the voluntary presentation of TB suspects to local clinics for diagnosis, i.e. passive case finding (PCF). In 2005 a participatory study suggested that popular interpretation and perception of TB within eight South African township sites in and around Cape Town, all carrying a high burden of HIV and undiagnosed TB, undermine PCF. Both people's association of TB with dirt and squalor, and the anticipation of HIV-related stigma, combine to impede TB diagnosis. Respondents conveyed TB as unavoidable; this perception is expressed in the context of vulnerability where so much-including dirt-is largely beyond the control of local residents. The lack of control has a disempowering effect, reducing the drive for seeking treatment. In addition, low confidence in patient confidentiality and anticipated HIV-related stigma act as direct deterrents to TB diagnosis and treatment. In conclusion, we wish to draw attention to high levels of disease stigma and vulnerability, and how these undermine PCF. Public health interventions that wish to improve case detection should aim to: (1) emphasize how early treatment improves outcome and can curb ongoing transmission; (2) combat a sense of communal vulnerability to TB; (3) address anticipated HIV-TB stigma; and (4) improve the quality of care provided at local diagnostic services, addressing low levels of patient confidentiality.