Disclosure, Shame, and Stigma Experienced by People Living with HIV

Among women and men who self-reported as HIV positive, the percentage who have ever disclosed their positive HIV status to anyone, who feel ashamed because of their positive HIV status, and who reported experiencing stigma in community and healthcare settings in the last 12 months due to their HIV status

Definition

1)      Percentage of women and men age 15-49 who self-reported as HIV positive and have disclosed their HIV status to anyone

2)      Percentage of women and men age 15-49 who self-reported as HIV positive and feel ashamed of their HIV status

3)      Percentage of women and men age 15-49 who self-reported as HIV positive and who say that people talk badly about them because of their HIV status in the past 12 months

4)      Percentage of women and men age 15-49 who self-reported as HIV positive and who say that someone else disclosed their status without their permission in the past 12 months

5)      Percentage of women and men age 15-49 who self-reported as HIV positive and have been verbally insulted/harassed/threatened because of their HIV status in the past 12 months

6)      Percentage of women and men age 15-49 who self-reported as HIV positive and have experienced stigma in a community setting in the past 12 months

7)      Percentage of women and men age 15-49 who self-reported as HIV positive and say that healthcare workers talked badly because of their HIV status in the past 12 months

8)      Percentage of women and men age 15-49 who self-reported as HIV positive and say that healthcare workers verbally abused them because of their HIV status in the past 12 months

Coverage:

Population base: Women and men age 15-49 self-reported as HIV positive (IR file, MR file)

Time period: Current status at time of survey and 12 months prior to the survey

Numerators:

1)      Percentage of women and men age 15-49 who self-reported as HIV positive and have disclosed their HIV status to others (women: v861 = 1 & v865 = 1; men: mv861 = 1 & mv865 = 1)

2)      Percentage of women and men age 15-49 who self-reported as HIV positive and feels ashamed of their HIV status (women: v861 = 1 & v866 = 1; men: mv861 = 1 & mv866 = 1)

3)      Percentage of women and men age 15-49 who self-reported as HIV positive and who say that people talk badly about them because of their HIV status (women: v861 = 1 & v867a = 1; men: mv861 = 1 & mv867a = 1)

4)      Percentage of women and men age 15-49 who self-reported as HIV positive and who say that someone else disclosed their status without their permission (women: v861 = 1 & v867b = 1; men: mv861 = 1 & mv867b = 1)

5)      Percentage of women and men age 15-49 who self-reported as HIV positive and have been verbally insulted/harassed/threatened because of their HIV status (women: v861 = 1 & v867c = 1; men: mv861 = 1 & mv867c = 1)

6)      Percentage of women and men age 15-49 who self-reported as HIV positive and have experienced stigma in a community setting (women: v861 = 1 & (v867a = 1 or v867b = 1 or v867c = 1); men: mv861 = 1 & (mv867a = 1 or mv867b = 1 or mv867c = 1))

7)      Percentage of women and men age 15-49 who self-reported as HIV positive and say that healthcare workers talked badly because of their HIV status (women: v861 = 1 & v867d = 1; men: mv861 = 1 & mv867d = 1)

8)      Percentage of women and men age 15-49 who self-reported as HIV positive and say that healthcare workers verbally abused because of their HIV status (women: v861 = 1 & v867e = 1; men: mv861 = 1 & mv867e = 1)

Denominator: Number of women (or men) age 15-49 who reported the result of their most recent HIV test was HIV positive (women: v861 = 1; men: mv861 = 1)

Variables: IR file, MR file.

Calculation

Numerator divided by denominator, expressed as a percentage.

Handling of Missing Values

Missing values are excluded from the numerator but included in the denominator.

Notes and Considerations

The denominators for these indicators are all based on self-reports of HIV status. Evidence suggests that some respondents who know that they have HIV choose not to disclose this information during the interview. Instead, they may report that the result of their most recent HIV test was negative or unknown, or that they have not been tested for HIV. Therefore, these indicators should be interpreted with caution as they may not be representative of all individuals who know they have HIV.

Changes over Time

These are new indicators for DHS-8.

References

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/).

Kim, A. A., I. Mukui, P. W. Young, J. Mirjahangir, S. Mwanyumba, J. Wamicwe, N. Bowen, L. Wiesner, L, Ng’ang’a, and K. M. De Cock for the KAIS Study Group. 2016. Undisclosed HIV Infection and ART Use in the Kenya AIDS Indicator Survey 2012: Relevance to Targets for HIV Diagnosis and Treatment in Kenya. AIDS 30:2685-2695.

Fishel, J. D., B. Barrère, and S. Kishor. 2014. Validity of Data on Self-reported HIV Status in Malawi and Uganda and Implications for Measurement of ARV Coverage. DHS Methodological Reports No. 10. Rockville, Maryland, USA: ICF International.

Resources

DHS-8 Tabulation plan: Table 13.8.1 and 13.8.2

API Indicator IDs:

TBD

(API link TBD, STATcompiler link TBD)

UNAIDS Global AIDS Monitoring (GAM) Indicator 6.2: “Internalized stigma reported by people living with HIV”

UNAIDS Global AIDS Monitoring (GAM) Indicator 6.3: “Stigma and discrimination experienced by people living with HIV in community settings”