Negative manifestations of HIV-related stigma (Not Final)
Percentage of people who report negative individual- and population-level manifestations of HIV-related stigma
In many settings, HIV is associated with a range of behaviours that are viewed as socially deviant or immoral, such as injecting drug use and sexual promiscuity. Because of these underlying societal beliefs, people living with HIV are often viewed as shameful and are thought to be responsible for having contracted HIV. The resulting prejudice directed towards people living with HIV creates a hostile environment that impacts on the quality of life of people living with HIV. This shaming process also has repercussions beyond the individual, greatly reducing the incentives to be tested for HIV or, in the event that the test result is positive, disclosing HIV status to sexual partners or family. Several studies have also demonstrated that the fear or anticipation of experiencing stigma if HIV positive hinders health seeking behaviours and the uptake of HIV prevention methods.
This indicator is not a direct measure of observations of stigma, as in low prevalence contexts few may have been in contact with people living with HIV. Instead, it measures perceptions of stigma, making it applicable in different countries and epidemic contexts, and reducing social desirability bias. The composite indicator measures the negative influence of HIV-related stigma in the population and is a sound indicator of the existence of stigma manifestations that may interfere with HIV prevention, care and treatment efforts. It includes a measure of the anticipated impact of stigma on the uptake of HIV testing, two measures of perceived stigma within the community and one measure of personal feelings of shame associated with HIV infection.
The indicator could provide further understanding and improve interventions in the area of reducing stigma by: (1) showing change over time in the level of stigma manifestations that may interfere with HIV prevention, care and treatment efforts, (2) allowing comparisons between national, provincial, state and more local administrations, and (3) pointing to priority areas for action.
*This indicator has been deemed relevant and promising by the UNAIDS MERG, but requires additional data collection prior to finalization. Please submit any results when using this indicator to Anne Stangl (firstname.lastname@example.org), so that the indicator development can continue.
Number of respondents (aged 15-49 years) who respond in the affirmative (Yes/Agree/It depends) to at least one of the four questions.
Those who have never heard of HIV and AIDS should be excluded from the numerator and denominator. Participants who respond “Don’t Know/Not sure” and those who refuse to answer any of the four questions should also be excluded from the analyses.
It is important to assess the proportion of eligible survey participants who respond “Don’t Know/Not sure” or who refuse to answer the questions. A high proportion of Don’t Know/Not sure responses and refusals will reduce the precision of the results and may indicate problems with applicability of the question within the survey setting.
Number of all respondents aged 15-49 years who have heard of HIV
Numerator / Denominator
Population-based surveys (Demographic and Health Survey, AIDS Indicator Survey, Multiple Indicator Cluster Survey or other representative survey)
This indicator is constructed from responses of respondents in a general population survey who have heard of HIV to the following set of prompted questions:
- In your opinion, are people hesitant to take an HIV test due to fear of people’s reaction if the test result is positive for HIV? (Yes; No; Don’t Know/Not Sure)
- Do people talk badly about people living with or thought to be living with HIV? (Yes; No; It Depends; Don’t Know/Not Sure)
- Do people living with or thought to be living with HIV lose respect or standing? (Yes; No; It Depends; Don’t Know/Not Sure)
- Do you agree or disagree with the following statement: I would be ashamed if someone in my family had HIV (Agree; Disagree; Don’t Know/No Opinion)
Every 3-5 years
Age-group (15-19, 20-24, 25-49)
Gender (Female, Male)
The main strength of this indicator is that it combines measures on perceived stigma within one’s community with a measure that gauges stigmatising beliefs by the respondent. The framing of the questions on perceived attitudes and behaviours (asking about how individuals believe others think or act) helps reduce social desirability bias, as respondents are not asked directly about their own attitudes and behaviours. This indicator does not rely on the respondent having observed overt acts of discrimination but instead measures their perceptions on how they expect their community members to treat people living with HIV. This measure of perception is additionally important given the effect of perceived stigma on individual action, regardless of the actual situation in reality, i.e. the perception that one's community is prejudiced might reduce incentives for testing, whether or not this high level of population-level prejudice exists in reality. This indicator is applicable to the general population, including people who know their HIV status and people who do not know their HIV status, and is applicable in both low and high prevalence countries.
Reporting on perceptions about how the wider population or community treat people living with HIV can also be a weakness, as the respondents may overstate stigma by other people within their communities. “People” may refer to quite different social entities in different locations and contexts and from one respondent to the next. This weakness can be partially addressed by assessing the population-level measures against the individual level measure on shame. On comparing reports of personal versus perceived community stigma, positive correlation would indicate whether perceptions of population-level stigma match well with individual behaviour, i.e., that reported population-level stigma is not being overstated. Another weakness relates to the generalizability of the concept, as the consequences of shaming may be very different across contexts. In other words, the concept of “having respect” or “standing” within a community will have different relevance in different countries, and possibly, within different settings within countries.
For further information on stigma and discrimination, and efforts to measure their prevalence, please see:
- Thematic Segment on Non-Discrimination, 31st meeting of the UNAIDS Programme Coordinating Board. Background Note. (www.unaids.org/en/media/unaids/contentassets/documents/pcb/2012/20121111...)
- Stangl, A., Brady, L., Fritz, K. Technical Brief: Measuring HIV Stigma and Discrimination. Washington DC and London: International Center for Research on Women and London School of Tropical Medicine; STRIVE, 2012 (http://strive.lshtm.ac.uk/system/files/attachments/STRIVE_stigma%20brief...).
- Stangl, A., Lloyd, J., Brady, L. et al. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? Journal of the International AIDS Society. 2013, vol 16 Supplement (www.jiasociety.org/index.php/jias/issue/view/1464).
For further information on DHS/AIS methodology and survey instruments, please visit: www.measuredhs.com