HIV This Week

“Just like fever”: a qualitative study on the impact of antiretroviral provision on the normalisation of HIV in rural Tanzania and its implications for prevention.

Roura M, Wringe A, Busza J, Nhandi B, Mbata D, Zaba B, Urassa M. BMC Int Health Hum Rights. 2009;9:22.

Once effective therapy for a previously untreatable condition is made available, a normalisation of the disease often occurs. Part of a broader initiative monitoring the implementation of the national antiretroviral therapy programme, this qualitative study investigated the impact of antiretroviral therapy availability on HIV perceptions in a rural ward of North Tanzania and its implications for prevention. A mix of qualitative methods was used including semi-structured interviews with 53 antiretroviral therapy clinic clients and service providers. Four group activities were conducted with persons living with HIV. Data were analyzed using the qualitative software package NVIVO7. People on ART often reported feeling increasingly comfortable with their status reflecting a certain “normalization” of the disease. This was attributed to their seeing other people affected by HIV, regaining physical health, returning to productive activities and receiving emotional support from health service providers. Overcoming internalised feelings of shame facilitated disclosure of HIV status, helped to sustain treatment, and stimulated voluntary counselling and testing uptake. However “blaming” stigma -where HIV+ people were considered responsible for acquiring a “moral disease” - persisted in the community and anticipating it was a key barrier to disclosure and voluntary counselling and testing uptake. Attributing HIV symptoms to witchcraft seemed an effective mechanism to transfer “blame” from the family unit to an external force but could lead to treatment interruption. As long as an HIV diagnosis continues to have moral connotations, a de-stigmatisation of HIV paralleling that occurring with diseases like cancer is unlikely to occur. Maximizing synergies between HIV treatment and prevention requires an enabling environment for HIV status disclosure, sustaining treatment, and safer sexual behaviours. Local leaders should be informed and sensitised and communities mobilised to address the blame-dimension of HIV stigma.

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Editor’s note: These authors differentiate self-stigma (internalised feelings of shame which result from accepting others’ judgements), enacted stigma (discrimination based on blame, fear, or perceived burden) and anticipated stigma (reactions that people expect from others if it were to become known that they are living with HIV). In this study, provision of HIV treatment had a powerful impact reducing self-stigma, which facilitated disclosure and encouragement of others to access voluntary testing and counselling. However, the potential of these effects was eroded by persistent blaming attitudes in this community that then reinforced anticipated stigma and HIV denial. ‘Normalisation’, whereby people living with HIV are progressively integrated into productive and social life, requires opinion leaders to speak out against blame and marginalisation, promote inclusion of people living with HIV, and come forward for HIV testing themselves.  

Wong LH, Rooyen HV, Modiba P, Richter L, Gray G, McIntyre JA, Schetter CD, Coates T. Test and Tell: Correlates and Consequences of Testing and Disclosure of HIV Status in South Africa (HPTN 043 Project Accept). J Acquir Immune Defic Syndr. 2009;50(2):215-22.

As the numbers of HIV-positive diagnoses rise in South Africa, it is important to understand the determinants and consequences of HIV disclosure. Wong and colleagues conducted a cross-sectional survey from random community samples of men and women in urban and rural South Africa (n = 217 HIV-positive individuals, 89% female). Two thirds of all known HIV-infected adults in these communities had disclosed their status to sexual partner(s). On average, individuals who disclosed were 2 years older, higher in socioeconomic assets, and had known their HIV status 7 months longer than those who had not told their sexual partner(s). The “ need for privacy” was the most cited reason (45%) for nondisclosure among those who had never disclosed. People who eventually disclosed their HIV status to sexual partner(s) were significantly more likely to report always or more frequently using condoms, reducing their number of sexual partners, and/or becoming monogamous. Among individuals who disclosed their HIV status, 77% reported increases in social support, with families providing the most support. The authors concluded that disclosure is associated with reports of consequent safer sexual behaviour and greater social support. Interventions might be informed by the costs and benefits of disclosure and differences in disclosure to sexual partner compared to one’s social network.

Editors’ note: While most studies of disclosure to date have been clinic-based, this is the first community study to examine HIV disclosure in South Africa. Conducted in 2003, the study found that, although 87% of HIV-positive individuals had disclosed their status to at least one person, more than a third did not disclose to sex partners. Since both sexual behaviour change and receiving more social support were associated with disclosure, further study of the barriers and facilitators of disclosure can help design programmes to assist people in making decisions about revealing their serostatus.

Ndebele P, Mfutso-Bengo J, Masiye F. HIV/AIDS reduces the relevance of the principle of individual medical confidentiality among the Bantu people of Southern Africa . Theor Med Bioeth. 2008;29(5):331-40.

The principle of individual medical confidentiality is one of the moral principles that Africa inherited unquestioningly from the West as part of Western medicine. The HIV pandemic in Southern Africa has reduced the relevance of the principle of individual medical confidentiality. Individual medical confidentiality has especially presented challenges for practitioners among the Bantu communities that are well known for their social inter-connectedness and the way they value their extended family relations. Individual confidentiality has raised several unforeseen problems for persons living with HIV, ranging from stigma and isolation to feelings of dejection as it drives them away from their families as a way of trying to keep information about their conditions confidential. The involvement of family members in treatment decisions is in line with the philosophy of Ubuntu and serves to respect patients’ and families’ autonomy while at the same time benefiting the individual patient.

Editors’ note: Regardless of location worldwide, respect for patients and for their cultural context should translate into careful consultation with them to obtain their consent for the involvement of family members. For rural Bantu-speaking people in Central, Eastern and Southern Africa where communitarian values are still dominant, the prevailing philosophy of Ubuntu represents group solidarity, compassion and mutual support that people living with HIV can draw down on and contribute to once they decide to share knowledge of their HIV infection.

Abdool Karim Q, Meyeer-Weitz A, Mboyi L, Carrara H, Mahlase G, Frohlich JA, & Abdool Karim SS. The influence of AIDS stigma and discrimination and social cohesion on HIV testing and willingness to disclose HIV in rural KwaZulu-Natal. South Africa Global Public Health . 2008; 3(4):351 - 365.

This study aims to understand the influence of AIDS stigma and discrimination, and social cohesion to HIV testing, and willingness to disclose an HIV status. A cross-sectional, interviewer administered survey ( N= 594) was conducted. Independent sample t -tests explored the mean differences between sex and age groups on stigma, discrimination, and social cohesion measurement. Logistic regression models were fitted with the above independent variables, and the binominal dependent variables: having had a test, willingness to have a test and disclose a positive status. The mean age of participants was 25.3 years and 60% were women. Only 28% had an HIV test, 63% were willing to have a test, and 82% reported a willingness to disclose an HIV status. High levels of stigma and discrimination were anticipated from the community, less so from their partners, and very little from families. Low levels of social distance exist towards people with HIV, membership to social networks seems limited, and inadequate social support for people with HIV was reported. The analysis indicates that AIDS stigma and discrimination, and inadequate social cohesion, limit access to voluntary counselling and testing, inhibit disclosure, and are, thus, barriers to care, support and prevention. Interventions need to extend the focus on information and education to strengthen social capital within a participatory and sustainable development framework.

Editors’ note: If they were to test HIV-positive, over 85% of respondents in this rural household survey anticipated support and compassion from their families but thought the community would gossip about them (86%), assume they have been unfaithful (84%), judge them as promiscuous (83%) or not pray for them (63%). Strong family cohesion could be a platform from which to extend and strengthen other forms of social capital, such as social cohesion, trust, and networks in the community to facilitate social support for people living with HIV and confront AIDS stigma. Without broad-based community mobilisation to address stigma and discrimination in this and similar settings, HIV testing uptake will remain low and uptake of antiretroviral treatment limited, despite beliefs that families will care and love their members who are found to be HIV-positive.

Ghabili K, Shoja MM, Kamran P. The Iranian female high school students’ attitude towards people with HIV/AIDS: a cross-sectional study. AIDS Res Ther. 2008 Jul 22;5:15.

Acquired Immunodeficiency Syndrome (AIDS) has become an important public health hazard in Iran. It is believed that AIDS-related knowledge does not necessarily translate into behaviour modification. Hence, it has been suggested that culturally appropriate educational campaigns should be implemented to obtain satisfactory outcomes. Here, Ghabili et al evaluated the female high school students’ attitude towards HIV in Tabriz, Iran to assess the cultural needs for the related educational programs and to discover sources of information about AIDS. Anonymous, self-administered questionnaires were filled by the young female students. Among 300 students, 91% agreed that being an HIV carrier should not be an obstacle to obtaining education and employment. Moreover, 72.5% of the students declared that the community should be informed of HIV-positive people. In addition, one-tenth declared that they would feel extremely uncomfortable towards their HIV infected classmate. In addition, only 16% of the students stated that they would continue to shop at HIV infected grocer’s store. The mass media and the experts were the major source and the most reliable source of information about AIDS, respectively. Tabrizian female students have overall negative attitudes towards HIV. HIV-related educational campaigns should target the students, society, and the families with emphasizing the leading roles of health staff.

Editors’ note: Among the striking negative attitudes among Iranian high school girls are the views that children who are HIV carriers should be send to special schools/classes (41%), special hospitals should be created for AIDS patients (86%), and most AIDS patients do not care if they infect other people too (66%). Clearly, school-based education programmes need to anchored in society-wide educational campaigns, using credible information and spokespeople to create new community and family understandings about HIV.