The intersection of antiretroviral therapy,peer support programmes,and economic empowerment with HIV stigma among HIV-positive women in West Nile Uganda

HIV stigma remains a major problem of the AIDS epidemic in sub-Saharan Africa. Women fear impending social stigma including blame, isolation and abuse. HIV infection and HIV stigma interact cyclically, creating and reinforcing economic and social exclusion for individuals living with HIV. Evidence suggests that interventions for people living with HIV infection that include, in combination, antiretroviral therapy (ART), peer support and economic empowerment are likely to be more effective than if used alone. We report a qualitative study in West Nile Uganda that explored perceptions of HIV stigma among fifty-four HIV-positive women who had similar access to ART and HIV peer support programmes, but varying levels of participation (full-time, intermittent, none) in economic empowerment programmes. Our study found that access to ART, peer support groups, and economic empowerment programmes helped to curb perceptions of deep-seated HIV stigma for participants. More expressions of usefulness, hope and psychological well-being prevailed with participants who had increased participation in economic empowerment programmes. Our findings underscore the value of HIV outreach programmes which combine ART, peer support and economic empowerment to alleviate HIV stigma. Further research to quantify the interaction of these factors is warranted.     

Effects of HIV-related stigma among an early sample of patients receiving antiretroviral therapy in Botswana

Botswana, with its estimated HIV prevalence of 37%, instituted a policy of universal access to antiretroviral therapy (ART) in 2002. Initial enrolment lagged behind expectations, with a shortfall in voluntary testing that observers have attributed to HIV-related stigma - although there are no published data on stigma among HIV-positive individuals in Botswana. We interviewed 112 patients receiving ART in 2000, finding evidence of pervasive stigma in patterns of disclosure, social sequelae, and delays in HIV testing. Ninety-four percent of patients reported keeping their HIV status secret from their community, while 69% withheld this information even from their family. Twenty-seven percent of patients said that they feared loss of employment as a result of their HIV status. Forty percent of patients reported that they delayed getting tested for HIV; of these, 51% cited fear of a positive test result as the primary reason for delay in seeking treatment, which was often due to HIV-related stigma. These findings suggest that success of large-scale national ART programmes will require initiatives targeting stigma and its social, economic and political correlates.     

Barriers to free antiretroviral treatment access among kothi-identified men who have sex with men and aravanis (transgender women) in Chennai, India

The Indian government provides free antiretroviral treatment (ART) for people living with HIV. To assist in developing policies and programs to advance equity in ART access, we explored barriers to ART access among kothis (men who have sex with men [MSM] whose gender expression is feminine) and aravanis (transgender women, also known as hijras) living with HIV in Chennai. In the last quarter of 2007, we conducted six focus groups and four key-informant interviews. Data were explored using framework analysis to identify categories and derive themes. We identified barriers to ART access at the family/social-level, health care system-level, and individual-level; however, we found these barriers to be highly interrelated. The primary individual-level barrier was integrally linked to the family/social and health care levels: many kothis and aravanis feared serious adverse consequences if their HIV-positive status were revealed to others. Strong motivations to keep one's HIV-positive status and same-sex attraction secret were interconnected with sexual prejudice against MSM and transgenders, and HIV stigma prevalent in families, the health care system, and the larger society. HIV stigma was present within kothi and aravani communities as well. Consequences of disclosure, including rejection by family, eviction from home, social isolation, loss of subsistence income, and maltreatment (although improving) within the health care system, presented powerful disincentives to accessing ART. Given the multi-level barriers to ART access related to stigma and discrimination, interventions to facilitate ART uptake should address multiple constituencies: the general public, health care providers, and the kothi and aravani communities. India needs a national policy and action plan to address barriers to ART access at family/social, health care system, and individual levels for aravanis, kothis, other subgroups of MSM and other marginalized groups.     

The multidimensional nature of HIV stigma: evidence from Mozambique

HIV stigma continues to be a major challenge to addressing HIV/AIDS in various countries in sub-Saharan Africa, including Mozambique. This paper explores the multidimensional nature of HIV stigma through the thematic analysis of five qualitative studies conducted in high HIV prevalence provinces in Mozambique between 2009 and 2012. These studies included 23 interviews with people living with HIV (PLHIV) (10 women and 13 men); 6 focus groups with 32 peer educators (24 women and 8 men) working for community-based organisations (CBOs) providing services to PLHIV; 17 focus groups with community members (72 men and 70 women); 6 interviews (4 women and 2 men) with people who had family members living with HIV/AIDS; 24 focus groups (12 with men and 12 with women) and 6 interviews with couples. Our findings indicate that HIV stigma is a barrier to HIV testing and counselling, status disclosure, partner notification, and antiretroviral therapy (ART) access and adherence, and that moral stigma seems to be more common than physical stigma. Additionally, the findings highlight that HIV stigma is a dynamic social process that is conceptualised as being tied to personal responsibility. To effectively diminish HIV stigma in Mozambique, future interventions should address moral stigma and re-conceptualise HIV as a chronic disease.     

Barriers and facilitators of retention in HIV care and treatment services in Iringa,Tanzania: the importance of socioeconomic and sociocultural factors

Although an increasing number of people living with HIV (PLHIV) in sub-Saharan Africa are benefiting from the rapid scale-up of antiretroviral therapy (ART), retention in HIV care and treatment services remains a major concern. We examined socioeconomic and sociocultural barriers and potential facilitators of retention in ART in Iringa, Tanzania, a region with the second highest prevalence of HIV in the country. In 2012, 116 in-depth interviews were conducted to assess community members' perceptions, barriers and facilitators of HIV treatment in Iringa, including key informants, persons at heightened risk for infection, and HIV service-delivery users. Data were transcribed, translated, entered into Atlas.ti, coded, and analyzed for key themes. In order to provide the full range of perspectives across the community on issues that may affect retention, we report findings from all 116 participants, but draw on verbatim quotes to highlight the experiences of the 14 PLHIV who reported that they were receiving HIV care and treatment services. Despite the growing availability of HIV care and treatment services in Iringa, participants reported significant barriers to retention, including lack of knowledge and misperceptions of treatment, access problems that included difficulties in reaching distant clinics and pervasive poverty that left PLHIV unable to cope with out-of-pocket costs associated with their care, persistent stigmatization of PLHIV and frequent reliance on alternative healing systems instead of biomedical treatment. Positive perceptions of the efficacy of ART, improved ART availability in the region, improved access to care through supplemental aid, and social support were perceived to enhance treatment continuation. Our findings suggest that numerous socioeconomic and sociocultural barriers inhibit retention in HIV care and treatment services in this setting. Intervention strategies that improve ART accessibility, incorporate supplemental aid, enhance social support, reduce stigma, and develop partnerships with alternative healers are needed to improve HIV-related outcomes.     

Barriers and facilitators to antiretroviral medication adherence among patients with HIV in Chennai, India: a qualitative study

Antiretroviral therapy (ART) for HIV is increasingly being introduced and utilized in diverse areas of the world. However, little research exists on adherence to ART in different cultural settings, particularly in developing countries such as India. This formative qualitative study examined barriers and facilitators of ART adherence among 60 (49 men, 11 women; 33 taking ART, 27 not currently taking ART) patients receiving HIV primary care at YRG CARE, a nongovernmental organization, in Chennai, India. The average participant reported becoming HIV infected through heterosexual transmission, was between 31 and 40 years old, had over ninth class standard education, was married, and generally had access to medical care; however, we obtained some qualitative data from various other risk categories. Trained ethnographers at the study site conducted in-depth interviews in the local language. These interviews were analyzed for content and ethnographic data. Almost all of the participants discussed the cost of ART as a barrier, with many reporting extended drug holidays, turning to family and/or friends, or taking drastic measures (i.e., selling family jewels, property) for financial assistance. Other barriers centered on privacy and stigma issues, such as disclosure of HIV inhibiting pill-taking and social support. Frequently discussed facilitators of adherence included perceived benefits of ART and proper adherence, perceptions about the consequences of nonadherence, and social support, if available. These data highlight the importance of reducing the cost of antiretroviral medications, involving family members in HIV care, and addressing privacy issues and stigma in counseling interventions in this setting.     

One Year After ART Initiation: Psychosocial Factors Associated with Stigma Among HIV-Positive Mozambicans

The pathways through which stigma is associated with psychological distress remains understudied in Africa. This study evaluates stigma among 277 Mozambicans who were on an antiretroviral therapy (ART) regimens for a full year. Using bivariate and multiple regression analyses, we examine psychosocial factors (disclosure decisions, perceived social support, and depression) associated with stigma, at ART initiation and 1 year later. We found 1 year after initiating ART, participants reported no change in stigma, a decrease in perceived social support, and an increase in depressive symptomology. Disclosing HIV status to friends (versus family or partner) was associated with lower levels of stigma. These findings suggest that HIV care in comparable settings should include counselling, support groups, and peer support, that includes stigma and disclosure concerns prior to and during the first year following diagnosis. Most importantly, assessment and treatment of depression should be incorporated into ongoing HIV care.     

HIV-Related Stigma,Social Support,and Psychological Distress Among Individuals Initiating ART in Ethiopia

Recent World Health Organization HIV treatment guideline expansion may facilitate timely antiretroviral therapy (ART) initiation. However, large-scale success of universal treatment strategies requires a more comprehensive understanding of known barriers to early ART initiation. This work aims to advance a more comprehensive understanding of interrelationships among three known barriers to ART initiation: psychological distress, HIV-related stigma, and low social support. We analyzed cross-sectional interview data on 1175 adults initiating ART at six HIV treatment clinics in Ethiopia. Experience of each form of HIV-related stigma assessed (e.g., anticipatory, internalized, and enacted) was associated with increased odds of psychological distress. However, among those who reported enacted HIV-related stigma, there was no significant association between social support and psychological distress. Interventions to improve mental health among people living with HIV should consider incorporating components to address stigma, focusing on strategies to prevent or reduce the internalization of stigma, given the magnitude of the relationship between high internalized stigma and psychological distress. Interventions to increase social support may be insufficient to improve the mental health of people living with HIV who experienced enacted HIV-related stigma. Future research should examine alternative strategies to manage the mental health consequences of enacted HIV-related stigma, including coping skills training.     

‘A Virus and Nothing Else’: the Effect of ART on HIV-Related Stigma in Rural South Africa

While the World Health Organization acknowledges the potential of antiretroviral therapy to reduce HIV-related stigma, few studies examine the nature of this linkage. This article discusses the connection between ART and HIV-related stigma, using qualitative analysis of interviews with HIV-positive adults at a rural South African clinic. The data has two main implications for ART’s role in stigma reduction: it strengthens the plausibility that ART can reduce stigma through weakening HIV/AIDS’s link with disfigurement and death, and shows that ART enables the establishment of spaces for support, which reduce stigma through normalization of the disease.     

Community beliefs,HIV stigma,and depression among adolescents living with HIV in rural Uganda

The availability of and increased access to antiretroviral therapy (ART) has significantly reduced the morbidity and mortality associated with HIV. As a result, perinatally infected youth are increasingly able to reach adolescence. There is limited information about the psychosocial challenges facing adolescents living with HIV (ALWH) in rural settings of sub-Saharan Africa. We sought to understand psychosocial challenges facing ALWH in rural Uganda and their effects on mental health and HIV treatment outcomes. We conducted 5 focus group discussions and 40 one-on-one in-depth interviews in Mbarara, Uganda with adolescents (aged 13–17 years) and adult women caregivers. All interviews were audio-recorded, transcribed directly into English, and coded using thematic analysis to identify themes related to psychosocial adversities and mental health. Adversities faced by adolescents included negative community perceptions (perceived aggression, presumed early mortality), HIV stigma (enacted and internalized), vulnerability factors (loss of parents, poverty), and health challenges (depression, ART non-adherence). In the conceptual model that emerged from the findings, negative community perceptions (about perceived aggression or presumed early mortality) predisposed ALWH to experience enactments and internalization of stigma that led to depression and ART non-adherence. The data also identified several protective factors, including counselling, family and religious support, and timely serostatus disclosure. Interventions to correct community misperceptions about HIV can potentially reduce stigma and thereby improve physical and mental health outcomes of ALWH.     

Antiretroviral Therapy Interruption Among HIV Postive People Who Use Drugs in a Setting with a Community-Wide HIV Treatment-as-Prevention Initiative

HIV Treatment as Prevention (TasP) initiatives promote antiretroviral therapy (ART) access and optimal adherence (≥95 %) to produce viral suppression among people living with HIV (PLHIV) and prevent the onward transmission of HIV. ART treatment interruptions are common among PLHIV who use drugs and undermine the effectiveness of TasP. Semi-structured interviews were conducted with 39 PLHIV who use drugs who had experienced treatment ART interruptions in a setting with a community-wide TasP initiative (Vancouver, Canada) to examine influences on these outcomes. While study participants attributed ART interruptions to “treatment fatigue,” our analysis revealed individual, social, and structural influences on these events, including: (1) prior adverse ART-related experiences among those with long-term treatment histories; (2) experiences of social isolation; and, (3) breakdowns in the continuity of HIV care following disruptive events (e.g., eviction, incarceration). Findings reconceptualise ‘treatment fatigue’ by focusing attention on its underlying mechanisms, while demonstrating the need for comprehensive structural reforms and targeted interventions to optimize TasP among drug-using PLHIV.     

Barriers to antiretroviral treatment access for injecting drug users living with HIV in Chennai,South India

India's National AIDS Control Organization provides free antiretroviral treatment (ART) to people living with HIV (PLHIV), including members of marginalized groups such as injecting drug users (IDUs). To help inform development of interventions to enhance ART access, we explored barriers to free ART access at government ART centers for IDUs living with HIV in Chennai by conducting three focus groups (n = 19 IDUs) and four key informant interviews. Data were explored using framework analysis to identify categories and derive themes. We found interrelated barriers at the family and social, health-care system, and individual levels. Family and social level barriers included lack of family support and fear of societal discrimination, as well as unmet basic needs, including food and shelter. Health-care system barriers included actual or perceived unfriendly hospital environment and procedures such as requiring proof of address and identity from PLHIV, including homeless IDUs; provider perception that IDUs will not adhere to ART, resulting in ART not being initiated; actual or perceived inadequate counseling services and lack of confidentiality; and lack of effective linkages between ART centers, needle/syringe programs, and drug dependence treatment centers. Individual-level barriers included active drug use, lack of self-efficacy in ART adherence, low motivation to initiate ART stemming from a fatalistic attitude, and inadequate knowledge about ART. These findings indicate that to facilitate IDUs gaining access to ART, systemic changes are needed, including steps to make the environment and procedures at government ART centers more IDU-friendly and steps to decrease HIV- and drug use-related stigma and discrimination faced by IDUs from the general public and health-care providers. Housing support for homeless IDUs and linkage of IDUs with drug dependence treatment are also essential.     

Race-Based Medical Mistrust,HIV-Related Stigma,and ART Adherence in a Diverse Sample of Men Who Have Sex with Men with HIV

AIDS and Behavior - Disparities in antiretroviral treatment (ART) access by race for men who have sex with men (MSM) with HIV persist. We assessed whether race-based medical mistrust and HIV stigma...     

Perceived stigma among patients receiving antiretroviral therapy: a prospective study in KwaZulu-Natal, South Africa

The aim of this study is to examine whether internalized AIDS stigma among HIV patients one year after antiretroviral therapy (ART) initiation is associated with sociodemographic characteristics, health status, social support, quality of life (QoL), and ARV adherence. This is a prospective study of all treatment-naive patients (N=735) recruited from all three public hospitals in Uthukela health district in KwaZulu-Natal and followed up at 6 and 12 months being on ART. Results indicated that despite a decrease in stigma seen in this study (may be due to ART) the level of stigma and discrimination remains high, and stigma reduction interventions are urgently needed in this population. CD4 cell counts significantly increased and HIV symptoms reduced significantly but depression symptoms remained high and even increased after 12 months on treatment. In multivariate analysis lower CD4 cell counts (odds ratio 0.5, 0.3-0.9), severe depression (5.6, 2.5-12.5) and low QoL (0.6, 0.5-0.8) were associated with internalized AIDS stigma. These findings may suggest that HIV care should include counseling and support that includes stigma concerns, depression, and QoL prior to and during the first year following diagnosis.     

Burial surveillance detected significant reduction in HIV--related deaths in Addis Ababa, Ethiopia

Objective To determine the level of HIV‐related mortality reduction after the introduction of large‐scale antiretroviral therapy (ART) using a burial surveillance system coupled with verbal autopsy (VA) in Addis Ababa, Ethiopia. Methods Prospective burial surveillance was established in 2001 at cemeteries in Addis Ababa. VA interviews were periodically conducted on a random sample of adult burials registered between 2001 and 2009. Independent physicians reviewed the completed VA questionnaires and assigned underlying causes of death. The period before 2005 was defined as pre‐ART and that since 2005 as the ART era. HIV‐specific mortality fractions were calculated by age, sex and year of burial to examine the mortality trends before and during the ART era. Results Of the 4239 VA physician diagnoses, 1087 (25.6%) were ascribed to HIV‐related deaths. HIV‐related deaths in 2009 were 33% fewer than in 2001. The proportion of HIV‐related deaths was reduced from 44.0% in the pre‐ART period to 20.0% in the ART era. Mortality in women (36.7%) declined more than in men (30%). A marked reduction in HIV‐specific mortality was observed in the age group 30–39 years (from 69.1% pre‐ART to 46.8% during ART era) compared to 20–29 (from 60.5% pre‐ART to 41.0% during ART) and 40–49 year olds (49.7%) pre‐ART to 34.4% during ART provision). Conclusion Burial surveillance combined with VA demonstrated a significant reduction in HIV‐related deaths during the provision of free ART. Replication of burial surveillance is recommended in similar settings, where a vital registration system is non‐existent, to track large‐scale population‐level interventions.     

Assessing the Impact of Food Assistance on Stigma Among People Living with HIV in Uganda Using the HIV/AIDS Stigma Instrument-PLWA (HASI-P)

HIV-related stigma among persons living with HIV/AIDS (PLHIV) is prevalent throughout sub-Saharan Africa. There is limited evidence, however, on which interventions are effective in reducing it. We used data from a prospective impact evaluation of a 12-month food assistance intervention among 904 antiretroviral therapy (ART)- naïve PLHIV in Uganda to examine the program impact on stigma. Stigma was measured using the comprehensive HASI-P scale, which demonstrated good internal consistency (Cronbach’s alpha = 0.87) and was correlated with several related constructs including physical and mental health-related quality of life, disclosure, and physical health symptoms in the sample. Using quasi-experimental difference-in-difference matching methods to better infer causality, we tested whether the intervention improved the overall stigma scale and its subscales. The food assistance intervention had a significant effect on reported internalized (but not external) stigma of approximately 0.2 SD (p < 0.01). The HASI-P stigma scale is a useful tool for measuring and tracking stigma. Food assistance interventions, embedded in an HIV care program, can reduce internalized stigma.     

Challenges to ART scale‐up in a rural district in Tanzania: stigma and distrust among Tanzanian health care workers,people living with HIV and community members

Objective To explore attitudes, perceptions and practices among health care workers, antiretroviral treatment (ART) patients and community members regarding ART care and the social consequences of ART roll‐out in rural Tanzania. Methods We performed focus group discussions and in‐depth interviews with health care workers, community members, ART patients, religious leaders, as well as social workers. Field observations and ethnographic assessments were conducted in parallel. Results We found widespread negative attitudes and perceptions of ART care HIV testing and the ART programme, a lack of trust in its sustainability, as well as lack of community and health worker involvement in the programme planning and treatment. HIV‐positive individuals on ART reported risky behaviours with the aim of revenge and were feared by community members. We also found that the ART availability was seen as an incentive to engage in HIV testing among some community members. Conclusion Our findings underline the importance of involving health workers and the community at a high level and their important role in promoting trust in the ART programme. There is an immense need to adjust interventions focusing on stigma reduction in the direction of ART scale‐up and to build awareness among ART patients so they understand how risky behaviours affect their personal well‐being and the community at large.     

"I want to stand on my own legs": A qualitative study of antiretroviral therapy adherence among HIV-positive women in Egypt

A review of the antiretroviral therapy (ART) literature revealed that not a single published study has examined the factors that influence patients' adherence to HIV medications in the Arab world. To mend this gap, this qualitative study collected data via face-to-face interviews with 27 HIV-positive Egyptian women who had been on ART for at least three months. Using a thematic analysis technique, five themes were identified: fear of stigma, financial constraints, characteristics of ART, social support, and reliance on faith. Notwithstanding the overwhelming number of inhibiting factors, most patients in this study were highly motivated to achieve perfect adherence.     

“Even if you’re HIV-positive there’s life after if you take your medication”: experiences of people on long-term ART in South Africa: a short report

South Africa’s national antiretroviral treatment (ART) programme, initiated in 2004, is the largest HIV treatment programme in the world with an estimated 4.2 million people on ART. Today, an HIV diagnosis is no longer associated with certain death, but is rather a manageable chronic disease, with all HIV-positive patients now eligible to receive treatment. In this study, we explore patient experiences at the onset of the ART programme, including facilitators and barriers around decision-making along the HIV care cascade (HIV testing, ART initiation, retention, and adherence). We conducted twenty-four in-depth interviews among adults (≥18 years old) who initiated ART between April 2004 and March 2005 and were alive, on treatment at enrolment (October 2015–March 2016) at a large public-sector clinic in Johannesburg, South Africa. Data were analysed using a thematic analysis approach. Patients cited physical wellbeing, responsibility for raising children, supportive clinic staff and noticeable improvements in health on ART as key facilitators to continued care. In contrast, changing clinic conditions, fear of side-effects and stigma were mentioned as barriers. This study provides a unique lens through which to evaluate factors associated with long-term retention and adherence to ART at a crucial time in ART programming when more people will be initiating life-long treatment. We must continue to focus on supportive and empathetic clinic environments, more convenient ways to access medication for patients, and developing tools or interventions that continue to address the issues of stigma and discrimination and build the support networks for all those on treatment.     

Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma

We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants’ experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common.