Experience of HIV-related discrimination in health-care settings

Export Indicator

Percentage of people living with HIV who report experiences of HIV-related discrimination in healthcare settings
What it measures

Progress in reducing HIV-related discrimination experienced by people living with HIV when seeking health-care services.

Rationale
Discrimination is a human rights violation and is prohibited by international human rights law and most national constitutions. In the context of HIV, discrimination refers to unfair or unjust treatment of an individual (either through actions or by failure to act) based on his or her real or perceived HIV status. Discrimination exacerbates risks and deprives people of their rights and entitlements, thus fuelling the HIV epidemic.
 
Stigma is the attribution of undesirable characteristics to an individual or group that reduces their status in the eyes of society. It frequently drives experiences of discrimination.
 
The health sector is one of the main settings where people living with HIV—and those perceived to be living with HIV—experience discrimination. This Indicator directly measures discrimination experienced by people living with HIV when seeking services in health-care settings.
 
The composite indicator can be monitored as a measure of the prevalence of HIV-related discrimination experienced in the health sector by people living with HIV. This indicator could provide further understanding of HIV-related health outcomes and improve interventions to reduce and mitigate HIV-related stigma and discrimination experienced along the treatment and care cascade by (a) showing change over time in the percentage of people living with HIV who experience discrimination in health-care settings and (b) indicating priority areas for action.
Numerator

Number of respondents who respond in the affirmative (“Yes”) to at least one of the seven items per question.

Denominator

Number of all respondents

Calculation

Numerator/denominator

Method of measurement
People Living with HIV Stigma Index
 
Respondents of the survey are asked if they experienced any of the following forms of HIV-related discrimination when seeking HIV and non-HIVspecific health services in the last 12 months:
  • Denial of care due to HIV status.
  • Advised not to have sex because of HIV status.
  • Being the subject of gossip or negative talk because of HIV status.
  • Verbal abuse because of HIV status.
  • Physical abuse because of HIV status.
  • Avoidance of physical contact because of HIV status.
  • Sharing of HIV status without consent.

 

Measurement frequency

Every 2–3 years

Disaggregation
Responses for each question are required, as is the consolidated response for the composite indicator. The composite indicator can be disaggregated by the following:
  • Type of health service (HIV, non-HIV).
  • Gender (male, female or transgender).
  • Key population (identification with at least one of the key population groups).
  • Age group (15–19 years, 20–24 years or 25–49 years).
  • Length of time living with HIV (0–<1 years, 1–4 years, 5–9 years, 10–14 years, or 15+ years).
Additional information requested

Explanation of the individual items

The proposed indicator combines 14 items that capture discrimination experienced by people living with HIV when seeking HIV care (seven items) and non-HIV care (seven items). During the 2016 consultation process to update the People Living with HIV Stigma Index survey, people living with HIV highlighted the importance of separately measuring discrimination experienced when seeking HIV and non-HIV care. In response, the new version of the survey asks about experiences of discrimination when seeking both HIV care and non-HIV care (whereas the original survey only asked about stigma experienced when seeking health services in general). When reporting on this indicator with data from People Living with HIV Stigma Index surveys conducted prior to 2017, it will not be possible to disaggregate by the type of health service sought.

 

Strengths and weaknesses
This indicator directly measures experiences of discrimination among people living with HIV who sought health services.
 
The recommended questions assess whether specific forms of discrimination have been experienced in a health-care setting. The experience of discrimination may be dependent on whether the health-care provider is aware of the person’s HIV status. Given this, disclosure of HIV status to the health-care provider should be collected whenever possible in order to help interpret the indicator.
 
In addition, people seeking HIV services at specialty HIV clinics may report fewer experiences of discrimination than people seeking HIV services that are integrated within general health-care services. Thus, capturing the type of clinic is recommended where possible. It also would be advisable to compare the findings from this indicator with Indicators 4.1 (Discriminatory attitudes towards people living with HIV) and 4.2 (Avoidance of health care among key populations) for a broader understanding of the stigma environment and the discrimination that can result in a given context.
 
Findings from this indicator should also be analysed in conjunction with the NCPI responses on programmes to address stigma and discrimination in health care and their scale, as well as programs to train health-care providers on human rights and medical ethics.
Further information
The indicator measures HIV-related discrimination experienced in health-care settings. HIV is often 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 often are viewed as shameful and are thought to be responsible for having contracted HIV. This shaming process has repercussions beyond
the individual because it greatly reduces incentives to be tested for HIV or, in the event the test result is positive, to disclose HIV status to sexual partners or family members.
 
Mahajan AP, Sayles JN, Patel VA, Remien RH, Sawires SR, Ortiz DJ et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008;22(Suppl 2):S67–79.
 
Nyblade L, Stangl A, Weiss E, Ashburn K. Combating HIV stigma in health care settings: what works? J Int AIDS Soc. 2009;12(1):15.
 
Confronting discrimination: overcoming HIV-related stigma and discrimination in health-care settings and beyond. Geneva: UNAIDS; 2017 (http://www.unaids.org/sites/default/files/media_asset/confronting-discri..., accessed 21 November 2017).