Stigma and discrimination experienced by people living with HIV in community settings

Export Indicator

Percentage of people living with HIV who report experienced stigma and discrimination in the general community in the last 12 months
What it measures

Progress towards reducing experiences of stigma and discrimination among people living with HIV in community settings

Rationale

Stigma is a negative stereotype based on distinguishing characteristics, such as behaviour, gender or health status. It is a well-documented barrier to the HIV care continuum, creating gaps across the prevention and treatment cascades. HIV stigma results from a range of drivers and facilitators, including negative and judgmmental attitudes towards people living with HIV, shame of an HIV-positive status, and social, cultural and gender norms. These manifest in a range of stigmatizing practices and experiences, including discrimination, that deny people living with HIV full social acceptance. This consequently deters them from accessing essential services and fueling social inequalities. Reducing HIV stigma and discrimination experienced by people living with HIV is critical for increasing uptake of and adherence to antiretroviral therapy and increasing viral suppression, all of which will improve health outcomes for people living with HIV.

Previous research suggests that it is important to measure community stigma separately from stigma experienced in health-care settings. This is due to the differing impacts of stigma experienced in these settings and the different programmatic responses needed to address them.

Numerator

Source: Population-based survey

  • Number of people living with HIV who report receiving a positive HIV test result and who agreed that one or more of the three experiences happened to them because of their HIV status in the last 12 months.

Or

Source: People Living with HIV Stigma Index

  • Number of respondents living with HIV who agreed that one or more of the eight experiences happened to them because of their HIV status in the last 12 months.
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

From population-based surveys: this indicator is constructed from responses to the following questions among respondents who report receiving a positive HIV test result.

  • Please tell me if the following things have happened to you, or if you think they have happened to you, because of your HIV status in the last 12 months:
    • People have talked badly about me because of my HIV status (yes/no).
    • Someone else disclosed my HIV status without my permission (yes/no).
    • I have been verbally insulted, harassed, or threatened because of my HIV status (yes/no).

Or

From the People Living with HIV Stigma Index: this indicator can also be constructed from responses to the following questions among all respondents.

  • Thinking about the last 12 months:
    • Have you felt excluded from social gatherings or activities (e.g., weddings, funerals, parties, clubs) because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Have you felt excluded from religious activities or places of worship because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Have you felt excluded from family activities because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Have you felt that family members have made discriminatory remarks or gossiped about you because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Has someone verbally harassed you (e.g., yelled, scolded or was otherwise verbally abusive) because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Has someone physically harassed you (e.g., pushed, hit or was otherwise physically abusive) because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Have you been refused employment or a work opportunity because of your HIV status? (yes, no, don't know, prefer not to answer)
    • Have you lost a source of income or job because of your HIV status? (yes, no, don't know, 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 experienced stigma and discrimination in the community setting, an important manifestation of stigma that has been demonstrated to impede HIV care and treatment among people living with HIV.

This indicator is calculated from responses to three questions collected in population-based surveys. The questions are drawn from a validated measure of experienced stigma and discrimination. The indicator can also be constructed from eight questions included in the People Living with HIV Stigma Index 2.0. The alternative questions capture a broader range of stigmatizing experiences, use slightly different phrasing and have different response categories. However, they were recommended for inclusion in the People Living with HIV Stigma Index 2.0 by technical experts and should provide a good indication of the level of experienced stigma and discrimination in the absence of population-level data.

Changes in the indicator should be interpreted as follows: an increase in the percentage indicates an increase in experienced stigma and discrimination among people living with HIV in a community setting and the need for mitigating action, whereas a decrease in the percentage indicates progress and a reduction in experienced stigma and discrimination among people living with HIV.

Using population-based 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 2.0. Selection bias is still a possibility, though, as the experiences of people living with HIV who are willing to self-report their HIV status in population-based surveys may be significantly different from those who choose not to self-report. 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 2.0 may be more appropriate.

The questions about experiences of stigma in the population-based survey focus mainly on verbal abuse and unwanted disclosure. Typically, measures of experienced stigma and discrimination include several items that capture different types of stigma in each of these settings, so it is possible that estimates of experienced stigma and discrimination may be underestimates. The questions about experiences of stigma from the People Living with HIV Stigma Index cover a wider range of experienced stigmas, including social exclusion, verbal abuse, physical harassment, refusal of employment and job loss. As such, constructing this indicator using data from the People Living with HIV Stigma Index 2.0 may provide a more robust indication of the level and types of experienced stigma and discrimination. However, the data are not generalizable beyond the people living with HIV sampled, as respondents are selected using snowball sampling versus random sampling methods.

Further information

Stangl 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 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/