Articles tagged as "Stigma and social exclusion"

Expectations and experiences of disclosing HIV status to sexual partners in Ghana

The 'fears' of disclosing HIV status to sexual partners: a mixed methods study in a counseling setting in Ghana.  

Obiri-Yeboah D, Amoako-Sakyi D, Baidoo I, Adu-Oppong A, Rheinlander T. AIDS Behav. 2015 Feb 26. [Epub ahead of print]

Encouraging disclosure within a trusting and supportive environment is imperative in dealing with HIV/AIDS related stigma. However, disclosure rates and the factors that influence it are vaguely understood in African societies. This study aimed at determining the disclosure rate and factors that influence disclosure in Cape Coast, Ghana. In-depth interviews of 15 peer educators and a survey of 510 PLHIV were used in a mixed methods study design. Majority of the study participants (78.6 %) had disclosed their HIV positive status to their sexual partners. Although peer educators in this study portrayed the overall outcome of disclosure to be negative, 84.0 % of disclosers were accepted by their partners without negative consequences after disclosure. This study suggests that the existing support services ill prepares newly diagnosed HIV positive clients and hampers disclosure initiatives. Providing comprehensive support services and re-training peer educators may be crucial in creating a safe disclosure environment in Ghana.

Abstract access

Editor’s notes: This mixed methods study explores the important issue of disclosure to sexual partners. Supporting increased rates of disclosure to partners is crucial for effective prevention efforts. But it may also be valuable in influencing the support that people living with HIV can receive from their sexual partner to manage their condition. This is pertinent because other research has illustrated that keeping their status a secret from partners and household members can impede adherence and sustained access to care. The initial data analysis of the 15 in-depth interviews with peer educators was used to inform the design of the questionnaire which was then completed by 510 people living with HIV in Cape Coast, Ghana. The findings from the formative qualitative research are also used to explain some of the subsequent quantitative findings.  

There are two particularly striking findings reported in the paper. The first is that among individuals who have disclosed their status, a significant majority, some 82%, did so within the first week of having been diagnosed. This suggests that there is a crucial, but short, window in which individuals may be more willing to disclose to partners. This is important for programme design and ensuring that pre- and post-test counselling includes discussion and support to disclose to partners. The second key finding is that while the survey data illustrates that the experience of disclosers was predominately positive, the 15 peer educators captured in the qualitative study portrayed a far more negative expectation about the risks involved in disclosure to partners. The time that had passed since individuals were diagnosed was not presented for either the quantitative or qualitative samples. Given the changing meaning of HIV within the context of antiretroviral therapy, the time since participants’ diagnosis and subsequent disclosure to partners may be an important factor in shaping individuals’ experiences and thus their expectations of the impact of disclosure. The evidence presented in this paper illustrates the importance not only of examining the experiences and expectations of disclosure by people living with HIV, but also in considering what may be influencing their expectations. The peer educator’s role may limit, as well as support, peoples’ readiness to disclose to partners. 

Africa
Ghana
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Don’t ask, don’t tell: concealment as a stigma management strategy in India

'I am doing fine only because I have not told anyone': the necessity of concealment in the lives of people living with HIV in India.

George MS, Lambert H. Cult Health Sex. 2015 Feb 23:1-14. [Epub ahead of print]

In HIV prevention and care programmes, disclosure of status by HIV-positive individuals is generally encouraged to contain the infection and provide adequate support to the person concerned. Lack of disclosure is generally framed as a barrier to preventive behaviours and accessing support. The assumption that disclosure is beneficial is also reflected in studies that aim to identify determinants of disclosure and recommend individual-level measures to promote disclosure. However, in contexts where HIV infection is stigmatised and there is fear of rejection and discrimination among those living with HIV, concealment of status becomes a way to try and regain as much as possible the life that was disrupted by the discovery of HIV infection. In this study of HIV-positive women and children in India, concealment was considered essential by individuals and families of those living with HIV to re-establish and maintain their normal lives in an environment where stigma and discrimination were prevalent. This paper describes why women and care givers of children felt the need to conceal HIV status, the various ways in which people tried to do so and the implications for treatment of people living with HIV. We found that while women were generally willing to disclose their status to their husband or partner, they were very keen to conceal their status from all others, including family members. Parents and carers with an HIV-positive child were not willing to disclose this status to the child or to others. Understanding the different rationales for concealment would help policy makers and programme managers to develop more appropriate care management strategies and train care providers to assist clients in accessing care and support without disrupting their lives.

Abstract access 

Editor’s notes: This paper provides a powerful illustration of the persistence of stigma in the lives of many people living with HIV in India. Using data collected in 2012, the authors illustrate how prejudice and discrimination shape the lives of the women and children included in this study. While access to antiretroviral therapy (ART) provided a way for participants to regain and maintain what is described as ‘normal life’, that same treatment could result in unintended disclosure. Participants spoke of the fear of being seen carrying ART, since illustrations of the pills were widely available at clinics. They described the challenges of disclosing to their children as well as other relatives. Disclosure to wider social networks posed a reputational threat because of the association of HIV with moral laxity. All these are challenges that many people face in other settings too, providing further evidence of the persistence of HIV-associated stigma. The authors also illustrate the unintended consequences of well-meaning policies. One striking illustration came from a participant who was using a free travel pass, available to people living with HIV to collect their treatment. The pass included the word ‘AIDS’ and a ticket collector ridiculed the woman and her husband in front of other passengers because of this evidence of infection. The authors make the point that encouraging disclosure may overlook the importance of concealment as a way to cope with stigma. 

Asia
India
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The impact of homophobia and criminalisation on MSM HIV vulnerability worldwide

Sexual stigma, criminalization, investment, and access to HIV services among men who have sex with men worldwide.

Arreola S, Santos GM, Beck J, Sundararaj M, Wilson PA, Hebert P, Makofane K, Do TD, Ayala G. AIDS Behav. 2015 Feb;19(2):227-34. doi: 10.1007/s10461-014-0869-x.

Globally, HIV disproportionately affects men who have sex with men (MSM). This study explored associations between access to HIV services and (1) individual-level perceived sexual stigma; (2) country-level criminalization of homosexuality; and (3) country-level investment in HIV services for MSM. 3340 MSM completed an online survey assessing access to HIV services. MSM from over 115 countries were categorized according to criminalization of homosexuality policy and investment in HIV services targeting MSM. Lower access to condoms, lubricants, and HIV testing were each associated with greater perceived sexual stigma, existence of homosexuality criminalization policies, and less investment in HIV services. Lower access to HIV treatment was associated with greater perceived sexual stigma and criminalization. Criminalization of homosexuality and low investment in HIV services were both associated with greater perceived sexual stigma. Efforts to prevent and treat HIV among MSM should be coupled with structural interventions to reduce stigma, overturn homosexuality criminalization policies, and increase investment in MSM-specific HIV services.

Abstract access 

Editor’s notes: Homosexuality is still illegal in 39% of the 193 UN recognised countries. This criminalisation likely increases HIV vulnerability among gay men and other men who have sex with men. In this study, 3340 gay men and other men who have sex with men from more than 115 countries completed an online survey about their perceptions of homophobia and their ease of accessing basic HIV prevention services. The authors conducted an ecological analysis to examine the relationship between the uptake of HIV services among gay men and other men who have sex with men. The authors looked at structural factors at the individual level which included their perceptions of homophobia within the society in which they live and at the country level including criminalising policies. More than 50% of respondents reported difficulty in accessing HIV services including condoms, lubricants, HIV testing services and antiretroviral therapy (ART). Perceived homophobia, criminalization of homosexual behaviour, and low country investment in HIV services were each associated with reduced access to condoms, lubricants, HIV testing services and ART. Improving access to HIV services for gay men and other men who have sex with men is urgently required as they carry a disproportionate burden of HIV in low and middle income countries. This study adds to a body of evidence which suggests that addressing structural barriers such as the criminalisation of homosexuality and sexual stigma (homophobia) will be necessary to reduce HIV vulnerability among gay men and other men who have sex with men, globally.

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More research is needed for understanding predictors of internalized stigma among people living with HIV

Predictors of internalised HIV-related stigma: a systematic review of studies in sub-Saharan Africa.

Pantelic M, Shenderovich Y, Cluver L, Boyes M. Health Psychol Rev. 2015 Jan 3:1-45. [Epub ahead of print]

Objective: This systematic review aims to synthesize evidence on predictors of internalised HIV stigma amongst people living with HIV in sub-Saharan Africa.

Method: PRISMA guidelines were used. Studies were identified through electronic databases, grey literature, reference harvesting and contacts with key researchers. Quality of findings was assessed through an adapted version of the Cambridge Quality Checklists.

Results: A total of 590 potentially relevant titles were identified. Seventeen peer-reviewed articles and one draft book chapter were included. Studies investigated socio-demographic, HIV-related, intra-personal and inter-personal correlates of internalised stigma. Eleven articles used cross-sectional data, six articles used prospective cohort data and one used both prospective cohort and cross-sectional data to assess correlates of internalised stigma. Poor HIV-related health weakly predicted increases in internalized HIV stigma in three longitudinal studies. Lower depression scores and improvements in overall mental health predicted reductions in internalized HIV stigma in two longitudinal studies, with moderate and weak effects respectively. No other consistent predictors were found.

Conclusion: Studies utilizing analysis of change and accounting for confounding factors are necessary to guide policy and programming but are scarce. High-risk populations, other stigma markers that might layer upon internalised stigma, and structural drivers of internalised stigma need to be examined.

Abstract access 

Editor’s notes: Internalized stigma can act as a barrier to HIV prevention and treatment. It can occur when a person living with HIV endorses negative attitudes associated with HIV and accepts these attitudes as applicable to themselves. Few stigma reduction programmes exist for people living with HIV. However, two recent studies have illustrated that internalized stigma reduction may be feasible through programmes targeting individual level factors. This paper systematically reviewed the evidence on predictors of internalized stigma among people living with HIV. The review included 18 papers looking at 13 unique studies in South Africa, Lesotho, Malawi, United Republic of Tanzania, Swaziland, Mozambique, Uganda, Kenya and Burkina Faso. All included studies were observational including prospective cohort and cross-sectional study designs. In all studies, participants were recruited through health facilities. Most included studies did not report on sampling methods.

All included studies defined internalized stigma as a negative self-perception due to HIV status and the resultant feelings of shame, difficulties around disclosure and self-exclusion. Only one study looked at the effect of antiretroviral therapy (ART) use on internalized stigma and found no evidence of an association. There was weak evidence across three studies that improved physical health (measured as improved physical functioning and fewer HIV-associated symptoms) lead to reductions in internalized HIV stigma. Two studies found some evidence that lower depression scores and improvements in overall mental health predicted reductions in internalized HIV stigma. There were inconsistent findings on whether time on ART had any association with internalized stigma. No other associations with socio-demographic or interpersonal factors were found. This is a field of new and emerging research and no implications for practice can be drawn given the inconsistent findings across studies. The cross-sectional nature of most of the included studies means that it is not possible to assess long-term associations. Further research is needed to understand the factors associated with internalized stigma and how these might change over time. Future research should use rigorous study methods and should focus on key populations, HIV transmission, and structural drivers of HIV.

Africa
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Promising results from a combination HIV prevention strategy for MSM in Central America

Effectiveness of a combination prevention strategy for HIV risk reduction with men who have sex with men in Central America: a mid-term evaluation.

Firestone R, Rivas J, Lungo S, Cabrera A, Ruether S, Wheeler J, Vu L. BMC Public Health. 2014 Dec 4;14:1244. doi: 10.1186/1471-2458-14-1244.

Background: Despite over a decade of research and programming, little evidence is available on effective strategies to reduce HIV risks among Central American men who have sex with men (MSM). The Pan-American Social Marketing Organization (PASMO) and partners are implementing a HIV Combination Prevention Program to provide key populations with an essential package of prevention interventions and services: 1) behavioral, including interpersonal communications, and online outreach; 2) biomedical services including HIV testing and counseling and screening for STIs; and 3) complementary support, including legal support and treatment for substance abuse. Two years into implementation, we evaluated this program's effectiveness for MSM by testing whether exposure to any or a combination of program components could reduce HIV risks.

Methods: PASMO surveyed MSM in 10 cities across Guatemala, El Salvador, Nicaragua, Costa Rica, and Panama in 2012 using respondent-driven sampling. We used coarsened exact matching to create statistically equivalent groups of men exposed and non-exposed to the program, matching on education, measures of social interaction, and exposure to other HIV prevention programs. We estimated average treatment effects of each component and all combined to assess HIV testing and condom use outcomes, using multivariable logistic regression. We also linked survey data to routine service data to assess program coverage.

Results: Exposure to any program component was 32% in the study area (n = 3531). Only 2.8% of men received all components. Men exposed to both behavioral and biomedical components were more likely to use condoms and lubricant at last sex (AOR 3.05, 95% CI 1.08, 8.64), and those exposed to behavioral interventions were more likely to have tested for HIV in the past year (AOR 1.76, 95% CI 1.01, 3.10).

Conclusions: PASMO's strategies to reach MSM with HIV prevention programming are still achieving low levels of population coverage, and few men are receiving the complete essential package. However, those reached are able to practice HIV prevention. Combination prevention is a promising approach in Central America, requiring expansion in coverage and intensity.

Abstract  Full-text [free] access

Editor’s notes: In countries where same-sex behaviour is criminalised and/or highly stigmatised, men who have sex with men (MSM) often find it very difficult to obtain appropriate sexual health services.  Such difficulties contribute to the continued high prevalence of HIV among MSM in some settings.  Strategies to prevent HIV transmission, increasingly favour a combination of activities which aim to reflect specific social conditions. It is important that these complex prevention programmes are systematically evaluated. This paper discusses one of the first evaluations of a combined HIV prevention strategy including behavioural, biomedical and psychosocial components. The strategy is aimed specifically at MSM in Central America, among whom the authors note that HIV prevalence ranges from 7.5% to 11.1%. About one-third of MSM participants in respondent-driven samples, reported exposure to at least one component of the programme during the two years of implementation. But few, three percent, received all three components, reflecting the hard-to-reach nature of the population as well as programmatic issues. Despite the modest coverage, there was some evidence that the programme was associated with reported risk reduction and HIV testing uptake. The study provides promising results, but highlights the need to tackle stigmatisation and social exclusion of MSM in this region, to enable prevention strategies to be effective at scale.

Latin America
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Feelings of regret after HIV status disclosure: prevalence, trends, and determinants

Was it a mistake to tell others that you are infected with HIV?: factors associated with regret following HIV disclosure among people living with HIV in five countries (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). Results from a community-based research.

Henry E, Bernier A, Lazar F, Matamba G, Loukid M, Bonifaz C, Diop S, Otis J, Préau M; The Partages study group. AIDS Behav. 2014 Dec 23. [Epub ahead of print]

This study examined regret following HIV serostatus disclosure and associated factors in under-investigated contexts (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). A community-based cross-sectional study was implemented by a mixed consortium [researchers/community-based organizations (CBO)]. Trained CBO members interviewed 1500 PLHIV in contact with CBOs using a 125-item questionnaire. A weighted multivariate logistic regression was performed. Among the 1212 participants included in the analysis, 290 (23.9 %) declared that disclosure was a mistake. Female gender, percentage of PLHIV's network knowing about one's seropositivity from a third party, having suffered rejection after disclosure, having suffered HIV-based discrimination at work, perceived seriousness of infection score, daily loneliness, property index and self-esteem score were independently associated with regret. Discrimination, as well as individual characteristics and skills may affect the disclosure experience. Interventions aiming at improving PLHIV skills and reducing their social isolation may facilitate the disclosure process and avoid negative consequences.

Abstract access 

Editor’s notes: Anticipated and perceived consequences of disclosing one’s HIV status are recognized as important drivers for HIV disclosure. This community-based study looked at the experience of disclosing one’s HIV status, and the emotions that were associated with disclosure. The study was nested within a larger cross-sectional research project. 1500 people living with HIV (PLHIV) from Ecuador, the Democratic Republic of the Congo (DRC), Mali, Romania, and Morocco were included in the study. Respondents were asked ‘Was it a mistake to tell others that you are infected with HIV?’ and to answer either ‘yes’ or ‘no.' Participants also responded to questions about the process of disclosure. Among people that had disclosed their status, some 23.9% said that it was a mistake to do so. Almost 40% of participants said that a person in their network learned about their status from a third party. More than 17% of participants responded that they faced rejection and eight percent of participants suffered discrimination at work following disclosure. But this varied greatly across countries. Factors associated with feeling regret after disclosing one’s status included being a female, perceived seriousness of HIV infection, and feeling lonely every day. This study highlights the fact that status disclosure can be emotional and stressful for people living with HIV. This suggests that people living with HIV must weigh the costs and benefits of disclosure before doing so and programmes that empower them to make informed decisions about disclosure may be beneficial. 

Africa, Europe, Latin America
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HIV and disability – a stronger link than perhaps we thought?

When I was no longer able to see and walk, that is when I was affected most: experiences of disability in people living with HIV in South Africa.

Hanass-Hancock J, Myezwa H, Nixon SA, Gibbs A. Disabil Rehabil. 2014 Dec 19:1-11. [Epub ahead of print]

Abstract Purpose: HIV-related disability is an emerging issue in countries where HIV is endemic. This study aimed to understand experiences of disability in patients living with HIV in South Africa using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework.

Methods: In-depth interviews were conducted with 19 HIV-positive people receiving ART through a public hospital in KwaZulu-Natal. Data were analyzed using collaborative qualitative content analysis.

Results: Participants described a variety of impairments related to mental, sensory, neuromusculoskeletal, skin, cardiovascular, digestive or reproductive systems. A tenuous relationship was evident between HIV and mental health impairments and the experience of other disabilities. Impairments affected participants' activity levels, especially mobility, domestic life, self-care and ability to work. Activity limitations affecting livelihood were often of more concern to participants than the impairments. Furthermore, women and men appeared to experience disability related to activities relevant to gendered norms in their cultural context.

Conclusions: More understanding of the intersections among HIV, disability, gender and livelihood is needed. To respond to the increased need to manage disability within HIV care in Africa, HIV programs should include rehabilitative approaches, address concerns related to livelihoods in households with disability and consider gender differences in the experience of disability.

Implications for Rehabilitation: HIV, its opportunistic infections and the treatments associated to them are related to health conditions and impairments that have the potential to develop into disability. Rehabilitation professionals in HIV endemic countries have therefore a larger and changing number of people living with HIV and need to consider the impact of the disease on the rehabilitation process. Mental health issues and disability might be interrelated and affect antiretroviral treatment (ART) adherence. Hence, rehabilitation has to use a holistic approach and integrate different therapy approaches (e.g. physiotherapy and mental health). The experience of living with HIV and developing disability has unreflected gender dynamics that need to be considered in rehabilitative care. Hence, the rehabilitation process has to consider the cultural realities and gendered experience of the condition. The study highlights the interrelationship between disability levels, the influence of environmental and social factors, and the changing experience related to gender. Hence, rehabilitation professionals in resource-poor settings have to go beyond the clinical response and therapy approaches in order to improve the activity and participation of people with disabilities and those living with HIV in their homes and communities. Community or home-based care might be avenues to further explore.

Abstract access 

Editor’s notes: While the existence of disability among people living with HIV and on antiretroviral therapy (ART) has been reported, few studies have investigated the individual’s experience of disability. This important study from South Africa aims to fill that gap. The authors used WHO International Classification of Functioning, Disability and Health (ICF) to guide their interviews and the analysis. They systematically sampled participants from an antiretroviral treatment clinic at a public hospital in KwaZulu-Natal. Importantly they did not purposely choose people with a visible disability because they wished to capture the perspectives of people who appeared to being doing well on ART as well as people who may have a visible impairment. No screening for disability was done prior to recruitment in the study. Ten of the 19 participants had no visible disability, but 17 out of 19 reported challenges at the impairment level of disability. These challenges were often related to mental function, sensory function and pain, headaches, painful feet and vision problems (which in some cases seemed to be linked to TB treatment). These different impairments affected mobility, social interactions, ability to make a living and self-esteem. Not all of these impairments were visible nor necessarily reported to clinic staff who perceived many of these people to be ‘doing well’ on ART.  The authors illustrate in this small but important study a great diversity of experience of disability across a small number of people in one clinic in South Africa. They highlight the importance of understanding the social and environmental factors which influence individual experience. Most importantly they stress the need to pay attention to impairment and the rehabilitation support that may be needed, even for people who appear to be doing well on medication.

Africa
South Africa
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Tensions between the role of motherhood and the role of sex worker

'If you have children, you have responsibilities': motherhood, sex work and HIV in southern Tanzania.

Beckham SW, Shembilu CR, Winch PJ, Beyrer C, Kerrigan DL. Cult Health Sex. 2014 Oct 1:1-15. [Epub ahead of print]

Many female sex workers begin sex work as mothers, or because they are mothers, and others seek childbearing. Motherhood may influence women's livelihoods as sex workers and their subsequent HIV risks. We used qualitative research methods (30 in-depth interviews and three focus group discussions) and employed Connell's theory of Gender and Power to explore the intersections between motherhood, sex work, and HIV-related risk. Participants were adult women who self-reported exchanging sex for money within the past month and worked in entertainment venues in southern Tanzania. Participants had two children on average, and two-thirds had children at home. Women situated their socially stigmatised work within their respectable identities as mothers caring for their children. Being mothers affected sex workers' negotiating power in complex manners, which led to both reported increases in HIV-related risk behaviours (accepting more clients, accepting more money for no condom, anal sex), and decreases in risk behaviours (using condoms, demanding condom use, testing for HIV). Sex workers/mothers were aware of risks at work, but with children to support, their choices were constrained. Future policies and programming should consider sex workers' financial and practical needs as mothers, including those related to their children such as school fees and childcare.

Abstract access 

 Editor’s notes: This important research sought to understand how sex workers negotiate this identity alongside their identity as mothers. Sex workers in sub-Saharan Africa have a greater risk of acquiring HIV than the general population. Many of these women are mothers. The authors conducted qualitative research with sex workers in southern Tanzania and using Cornell’s theory of Gender and Power as a theoretical frame, explored the intersections between motherhood, sex work and HIV related risk behaviours. This theory outlines four structures of gender: labour, power, emotional, and symbolic relations. Their analysis revealed three key themes. These included motherhood/respectability versus sex work/stigma; for the children; and motherhood/power, and HIV risk. The first theme highlights how for these women that motherhood denotes respect in contrast to the stigma evoked by sex work. Thus women often emphasised their role as mothers over that as sex workers. The second theme emphasised that for these women the ideal mother has the financial support of a husband and their role is to care for their children. However, as many of these women were unable to rely on partners, sex work enabled them to care for their children and ensure their well-being. The third theme, revealed a contradiction. Being a mother could either empower their role as a sex worker, drawing on this respectability and enabling them to negotiate higher payments from clients; or seeking higher payments for risky sexual acts such as anal sex or sex without a condom to ensure the well-being of their children. The authors conclude that in relation to Cornell’s theory these women are compromised in terms of labour both as mothers and as stigmatised sex workers and this is also related to lack of power in both of these areas. In emotional relations, women’s bond with their children is highly important and drove their need to earn money through sex work. Further, in terms of symbolic relations women used the role of motherhood to ensure their dignity and respect.

Africa
United Republic of Tanzania
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The challenge of living with HIV and being a ‘real man’ – the intersection of stigma and masculinity

Intersectionality of HIV stigma and masculinity in eastern Uganda: implications for involving men in HIV programmes.

Mburu G, Ram M, Siu G, Bitira D, Skovdal M, Holland P. BMC Public Health. 2014 Oct 11;14:1061. doi: 10.1186/1471-2458-14-1061.

Background: Stigma is a determinant of social and health inequalities. In addition, some notions of masculinity can disadvantage men in terms of health outcomes. However, few studies have explored the extent to which these two axes of social inequality intersect to influence men's health outcomes. This paper investigates the intersection of HIV stigma and masculinity, and its perceived impact on men's participation in and utilisation of HIV services in Uganda.

Methods: Interviews and focus group discussions were conducted in Mbale and Jinja districts of Uganda between June and October 2010. Participants were men and women living with HIV (n = 40), their family members (n = 10) and health providers (n = 15). Inductive analysis was used to identify mechanisms through which stigma and masculinity were linked.

Results: Our findings showed that HIV stigma and masculinity did not exist as isolated variables, but as intersecting phenomena that influenced men's participation in HIV services. Specifically, HIV stigma threatened masculine notions of respectability, independence and emotional control, while it amplified men's risk-taking. As a result, the intersection of masculinity and HIV stigma prevented some men from i) seeking health care and accepting a 'sick role'; ii) fulfilling their economic family responsibilities; iii) safeguarding their reputation and respectability; iv) disclosing their HIV status; and v) participating in peer support groups. Participation in some peer support activities was considered a female trait and it also exacerbated HIV stigma as it implicitly singled out those with HIV. In contrast, inclusion of income-generating activities in peer support groups encouraged men's involvement as it enabled them to provide for their families, cushioned them from HIV stigma, and in the process, provided them with an opportunity to redeem their reputation and respectability.

Conclusion: To improve men's involvement in HIV services, the intersection between HIV stigma and masculinity should be considered. In particular, better integration of and linkage between gender transformative interventions that support men to reconstruct their male identities and reject signifiers of masculinity that prevent their access to HIV services, and stigma-reduction interventions that target social and structural drivers of stigma is required within HIV programmes.

Abstract  Full-text [free] access

Editor’s notes: Both stigma and masculinity can affect men’s health seeking behaviour. This article builds on previous research in Uganda on how stigma affects how men cope with HIV. It draws on the concept of intersectionality to examine how the structural vulnerabilities of stigma and masculinity intersect. It explores the perceived influence of this intersection, and the extent to which it may further disadvantage men in their participation and utilisation of HIV services. Drawing on qualitative research from eastern Uganda, this study explores how various signifiers of masculinity undermined men’s health by restricting their participation in peer support groups and HIV services. Signifiers of masculinity included physical and emotional strength, respectability, and involvement in multiple sexual relationships. Some signifiers of masculinity were also often intertwined with HIV stigma, for example men’s reluctance to adopt a sick role was reinforced by the fact that HIV was a stigmatised disease. Furthermore, shame, secrecy, a perceived sense of powerlessness, and loss of respect were often contrary to masculine notions of respect. Similarly, stigma was also shown to interact with masculine provider role identities. As a result, men sought to avoid the additional shame of not being able to provide for their families by planning to work, and therefore not prioritising clinic appointments or participation in unpaid group activities. 

Through this research, the authors argue that stigma and masculinity, rather than being understood as unilateral variables, should be considered in conjunction. This is important in order to explore how these variables might amplify or otherwise modify each other to determine men’s willingness to participate in HIV services. The authors highlight a number of implications of their research. First, HIV programmes should mobilise communities to discuss the possible harmful effects of adhering to prevalent masculine notions of risk-taking, independence, and emotional control. Second, social protection and livelihood activities targeting men living with HIV and their families should be integrated into HIV programmes and peer support group activities. Third, social support networks of men living with HIV should be bolstered in order to help men deal with stigma.

Africa
Uganda
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Taking oral and vaginal antiretrovirals for HIV prevention, and the fear of a ‘spoilt identity’

Perspectives on use of oral and vaginal antiretrovirals for HIV prevention: the VOICE-C qualitative study in Johannesburg, South Africa.

van der Straten A, Stadler J, Luecke E, Laborde N, Hartmann M, Montgomery ET. J Int AIDS Soc. 2014 Sep 8;17(3 Suppl 2):19146. doi: 10.7448/IAS.17.3.19146. eCollection 2014.

Introduction: Antiretroviral (ARV)-based pre-exposure prophylaxis (PrEP) is a promising new HIV prevention strategy. However, variable levels of adherence have yielded mixed results across several PrEP trials and populations. It is not clear how taking ARV - traditionally used for HIV treatment - is perceived and how that perception may affect the use of these products as preventives. We explored the views and experiences of VOICE participants, their male partners and community members regarding the use of ARV as PrEP in the VOICE trial and the implications of these shared meanings for adherence.

Methods: VOICE-C was a qualitative ancillary study conducted at the Johannesburg site of VOICE, a multisite, double-blind, placebo-controlled randomised trial testing tenofovir gel, oral tenofovir and oral Truvada(R) for HIV PrEP. We interviewed 102 randomly selected female VOICE participants, 22 male partners and 40 community members through in-depth interviews, serial ethnography, or focus group discussions. All interviews were audiotaped, transcribed, translated and coded thematically for analysis.

Results: The concept of ARV for prevention was understood to varying degrees across all study groups. A majority of VOICE participants understood that the products contained ARV, more so for the tablets than for the gel. Although participants knew they were HIV negative, ARV was associated with illness. Male partners and community members echoed these sentiments, highlighting confusion between treatment and prevention. Concerned that they would be mistakenly identified as HIV positive, VOICE participants often concealed use of or hid their study products. This occasionally led to relationship conflicts or early trial termination. HIV stigma and its association with ARV, especially the tablets, was articulated in rumour and gossip in the community, the workplace and the household. Although ARV were recognised as potent and beneficial medications, transforming the AIDS body from sickness to health, they were regarded as potentially harmful for those uninfected.

Conclusions: VOICE participants and others in the trial community struggled to conceptualise the idea of using ARV for prevention. This possibly influenced willingness to adopt ARV-based prevention in the VOICE clinical trial. Greater investments should be made to increase community understanding of ARV for prevention and to mitigate pervasive HIV stigma.

Abstract  Full-text [free] access

Editor’s notes: VOICE C was a qualitative ancillary study looking at the experiences of women participating in the VOICE clinical trial, testing the efficacy of pre-exposure prophylaxis (PrEP) and topical microbicides. Other work published by these authors has focused on the challenges of adherence to these products. This paper investigates the views and experiences of the women participants, male partners and community members on PrEP and the microbicide gel. Women using the microbicide gel preferred it to the tablet, perhaps because of the association of tablets with being HIV-positive. However, half of the women using the gel were reported to be unaware that the gel contained antiretroviral drugs (ARV), which may also have been a factor in this preference. A number of women taking tablets worried about being thought to be HIV-positive if seen with the drug. Another of their and their partner’s concerns was that the drug may not be safe for people who were HIV negative. The authors note that the strong association of ARV with an HIV-positive status challenged adherence and trial participation. The findings point to the need for careful attention to provide sufficient information to engender participant understandings of trial products and procedures. Also, beliefs in the wider community where trials take place need to be understood, and where possible addressed, not only to support trial participation, but also to mitigate pervasive HIV stigma.

Africa
South Africa
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