Internalized stigma reported by people living with HIV

Export Indicator

Percentage of people living with HIV who report internalized stigma
What it measures

Progress towards reducing internalized, also known as self-, stigma among people living with HIV

Rationale

Internalized stigma, where people living with HIV cognitively or emotionally absorb negative messages or stereotypes about HIV and then apply these negative feelings to themselves, has been linked with the refusal to accept antiretroviral therapy among newly diagnosed people living with HIV. Internalized stigma also impedes antiretroviral therapy adherence among people living with HIV by compromising social support and adaptive coping, and it has been linked to lower viral suppression among people living with HIV who are taking antiretroviral therapy.

This indicator can be monitored as a measure of a key manifestation of HIV-related stigma among people living with HIV.

Numerator

Source: Population-based survey

Number of people living with HIV who report receiving a positive HIV test result and agreed with the statement

Or

Source: People Living with HIV Stigma Index

Number of respondents who agreed with the statement

Denominator

Source: Population-based survey

Number of respondents who report receiving a positive HIV test result

Or

Source: People Living with HIV Stigma Index

Number of all respondents

Calculation

Numerator/denominator

Method of measurement

Population-based surveys. This indicator is constructed from responses to the following question among respondents who report receiving a positive HIV test result.

  • I have felt ashamed because of my HIV status (agree/disagree).

People Living with HIV Stigma Index survey. This indicator is constructed from responses to the following question among respondents.

  • I am ashamed that I am HIV-positive (agree/disagree/prefer not to answer).
Measurement frequency

Population-based surveys: every 3-5 years.

People Living with HIV Stigma Index survey: every 2-3 years.

Disaggregation
  • Age (15-19, 20-24, 25-49 and 50+ years).
  • Gender (male, female, prefer not to say). The last option is only available for data from People Living with HIV Stigma Index Version 2.0.
Additional information requested

None

Strengths and weaknesses

This indicator directly measures internalized stigma, an important manifestation of stigma that has been demonstrated to impede HIV care and treatment among people living with HIV. It is calculated from responses to a single question, which assesses internalized stigma among respondents living with HIV. The question is drawn from a validated measure of internalized stigma.

Changes in the indicator should be interpreted as follows: an increase in the prevalence indicates an increase in internalized stigma and a need for mitigating actions, whereas a decrease in the prevalence indicates progress towards and a reduction in internalized stigma.

Using population-based survey data to construct this indicator will enhance comparison across countries and contexts, as the indicator will be based on data from people who self-report living with HIV drawn from a random sample of the general public. This reduces potential response and selection biases that are possible when using a snowball sampling approach, as is done with the People Living with HIV Stigma Index. However, in countries where HIV prevalence is low, or where HIV stigma is very high, population-based surveys may not achieve large sample sizes of self-reported people living with HIV. In these instances, targeted surveys like the People Living with HIV Stigma Index may be more appropriate.

Typically, internalized stigma is captured with a composite indicator composed of agreement with one of at least three items. As this indicator is based on responses to only one question, it is possible that internalized stigma may be underestimated, but the single item recommended to construct this indicator had the highest level of agreement of the three items previously validated together.

Further information

Hargreaves J, Pliakas T, Hoddinott G, Mainga T, Mubekapi-Musadaidzwa C, Donnell D et al. HIV stigma and viral suppression among people living with HIV in the context of universal test and treat: analysis of data from the HPTN 071 (PopART) trial in Zambia and South Africa. J Acquir Immune Defic Syndr. 2020;85(5):561-570

Strangl AL, Lilleston P, Mathema H, Pliakas T, Krishnaratne S, Sievwright K et al. Development of parallel measures to assess HIV stigma and discrimination among people living with HIV, community members and health workers in the HPTN 071 (PopART) trial in Zambia and South Africa. J Int AIDS Soc. 2019;22(12):e25421 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6912047/).

For more on the methods and survey instruments for the Demographic and Health Survey and the AIDS Indicator Survey, see: http://dhsprogram.com

For more on the methods and survey instrument for the People Living with HIV Stigma Index, see: https://www.stigmaindex.org/