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.

The study aim is to explore the results of an HIV stigma intervention in five African health care settings. A case study approach was used. The intervention consisted of bringing together a team of approximately 10 nurses and 10 people living with HIV or AIDS (PLHA) in each setting and facilitating a process in which they planned and implemented a stigma reduction intervention, involving both information giving and empowerment. Nurses (n ¼ 134) completed a demographic questionnaire, the HIV=AIDS Stigma Instrument-Nurses (HASI-N), a selfefficacy scale, and a self-esteem scale, both before and after the intervention, and the team completed a similar set of instruments before and after the intervention, with the PLHA completing the HIV=AIDS Stigma Instrument for PLHA (HASI-P). The intervention as implemented in all five countries was inclusive, action-oriented, and well received. It led to understanding and mutual support between nurses and PLHA and created some momentum in all the settings for continued activity. PLHA involved in the intervention teams reported less stigma and increased self-esteem. Nurses in the intervention teams and those in the settings reported no reduction in stigma or increases in self-esteem and self-efficacy, but their HIV testing behavior increased significantly. This pilot study indicates that the stigma experience of PLHA can be decreased, but that the stigma experiences of nurses are less easy to change. Further evaluation research with control groups and larger samples and measuring change over longer periods of time is indicated.

This cohort study is the first to document empirically in a longitudinal sample, that perceived HIV stigma has a significantly negative and constant impact upon life satisfaction QoL for people with HIV infection. In the absence of any intervention to address and reduce stigmatization, individuals will continue to report poorer life satisfaction evidenced by reduced living enjoyment, loss of control in life, decreased social interactivity, and decreased perceived health status.

People living with HIV (PLWH) and their families are subjected to prejudice, discrimination, and hostility related to the stigmatization of AIDS. This report examines how PLWH cope with HIV-related stigma in the five southern African countries of Lesotho, Malawi, South Africa, Swaziland, and Tanzania. A descriptive qualitative research design was used to explore the experience of HIV-related stigma of PLWH and nurses in 2004. A total of 43 focus groups were conducted with 251 participants (114 nurses, 111 PLWH, and 26 volunteers). In describing incidents of stigma, respondents reported strategies used or observed to cope with those incidents. Nurse reports of coping strategies that they used as well as observed in HIV-infected patients were coded. Coping strategies used by PLWH in dealing with HIV-related stigma were coded. A total of 17 different self-care strategies were identified: restructuring, seeing oneself as OK, letting go, turning to God, hoping, changing behavior, keeping oneself active, using humor, joining a support or social group, disclosing one's HIV status, speaking to others with same problem, getting counseling, helping others to cope with the illness, educating others, learning from others, acquiring knowledge and understanding about the disease, and getting help from others. Coping appears to be self-taught and only modestly helpful in managing perceived stigma.

Health care workers who encourage PLWA to disclose their HIV status must carefully consider the implications of encouraging disclosure in an environment with high levels of stigma, and must recognize the real possibility that PLWA may experience serious verbal and physical abuse as a consequence of disclosure.