Most people with HIV have disclosed their status to someone, often with mixed results. Most health literature seems to favor disclosure by persons living with acquired immunodeficiency syndrome (AIDS), but it could be that to disclose is not always a good thing. We used a descriptive, qualitative research design to explore the experience of human immunodeficiency virus (HIV) and AIDS stigma of people living with HIV or AIDS and nurses involved in their care in Africa. Focus group discussions were held with respondents. We asked them to relate incidents that they themselves observed, and those that they themselves experienced in the community and in families. Thirty-nine focus groups were conducted in five countries in both urban and rural settings. This article is limited to a discussion of data related to the theme of disclosure only. The sub-themes of disclosure were experiences before the disclosure, the process of disclosure, and responses during and after disclosure.

This article describes the development and testing of a quantitative measure of HIV/AIDS stigma as experienced by people living with HIV/AIDS. This instrument is designed to measure perceived stigma, create a baseline from which to measure changes in stigma over time, and track potential progress towards reducing stigma. It was developed in three phases from 2003-2006: generating items based on results of focus group discussions; pilot testing and reducing the original list of items; and validating the instrument. Data for all phases were collected from five African countries: Lesotho, Malawi, South Africa, Swaziland and Tanzania. The instrument was validated with a sample of 1,477 persons living with HIV/AIDS from all of the five countries. The sample had a mean age of 36.1 years and 74.1% was female. The participants reported they knew they were HIV positive for an average of 3.4 years and 46% of the sample was taking antiretroviral medications. A six factor solution with 33 items explained 60.72% of the variance. Scale alpha reliabilities were examined and items that did not contribute to scale reliability were dropped. The factors included: Verbal Abuse (8 items, alpha=0.886); Negative Self-Perception (5 items, alpha=0.906); Health Care Neglect (7 items, alpha=0.832); Social Isolation (5 items, alpha=0.890); Fear of Contagion (6 items, alpha=0.795); and Workplace Stigma (2 items, alpha=0.758). This article reports on the development and validation of a new measure of stigma, HIV/AIDS Stigma Instrument - PLWA (HASI-P) providing evidence that supports adequate content and construct validity, modest concurrent validity, and acceptable internal consistency reliability for each of the six subscales and total score. The scale is available is several African languages.

The availability of antiretroviral medications has transformed living with HIV infection into a manageable chronic illness, and high levels of adherence are necessary. Stigma has been identified as one reason for missing medication doses. The objective of this study was to explore the relationship between perceived HIV stigma and self-reported missed doses of antiretroviral medications in a 12-month, repeated measures cohort study conducted in Lesotho, Malawi, South Africa, Swaziland, and Tanzania. Data were collected from 1457 HIV-positive individuals at three times between January 2006 and March 2007. Participants completed a series of questionnaires. Of the 1457 participants, 698 were taking ARVs during the study and are included in this analysis. There was a significant relationship between perceived HIV stigma and self-report of missed medications over time (t=6.04, p≤ 0.001). Individuals who reported missing more ARV medications also reported higher levels of perceived HIV stigma. Individuals reporting fewer medication worries reported decreased stigma over the one year period (t= -4.79,p 0.001). While those who reported increased symptom intensity also reported increased stigma initially (t=8.67, p≤ 0.001) that remained high over time. This study provides evidence of a significant and stable correlation that documents the relationship between perceived HIV stigma and self-reported reasons for missed medications over time. These findings suggest that part of the reason for poor adherence to ARV medications is linked to the stigma experienced by people living with HIV.

Title. A conceptual model of HIV/AIDS stigma from five African countries Aim.  This paper is a report on the development of a conceptual model delineating contexts and processes of HIV/AIDS stigma as reported by persons living with HIV/AIDS and nurses from African countries. It is part of a larger study to increase understanding of HIV/AIDS stigma. Background.  Researchers have defined stigma, explored determinants and outcomes of stigma and attempted to measure its multiple dimensions. This literature is difficult to synthesize, and often does not distinguish adequately between experiences of stigma and its causes and outcomes. Method.  Forty‐three focus groups were held with persons living with HIV/AIDS and nurses in five African countries in 2004. Focus group recordings were transcribed and coded. The data were organized into a conceptual model of HIV/AIDS stigma. Findings.  Two components were identified in the data: contextual factors – environment, healthcare system, agents – that influence and affect stigma and the stigma process itself. The stigma process included four dimensions: triggers of stigma, stigmatizing behaviours, types of stigma and the outcomes of stigma. Conclusion.  A conceptual model is presented that delineates the dynamic nature of stigma as reported by study participants. The model may be used to identify areas appropriate for the design and testing of stigma reduction interventions that have a goal of reducing the burden of HIV/AIDS stigma.

ObjectiveThe aim of this study was to explore possible differences in health care seeking behaviour among a rural and urban African population.DesignA cross sectional design was followed using the infrastructure of the PURE-SA study. Four rural and urban Setswana communities which represented different strata of urbanisation in the North West Province, South Africa, were selected. Structured interviews were held with 206 participants. Data on general demographic and socio-economic characteristics, health status, beliefs about health and (access to) health care was collected.ResultsThe results clearly illustrated differences in socio-economic characteristics, health status, beliefs about health, and health care utilisation. In general, inhabitants of urban communities rated their health significantly better than rural participants. Although most urban and rural participants consider their access to health care as sufficient, they still experienced difficulties in receiving the requested care. The difference in employment rate between urban and rural communities in this study indicated that participants of urban communities were more likely to be employed. Consequently, participants from rural communities had a significantly lower available weekly budget, not only for health care itself, but also for transport to the health care facility. Urban participants were more than 5 times more likely to prefer a medical doctor in private practice (OR:5.29, 95% CI 2.83-988).ConclusionRecommendations are formulated for infrastructure investments in rural communities, quality of health care and its perception, improvement of household socio-economical status and further research on the consequences of delay in health care seeking behaviour.