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 / Ce qui est mesuré / Qué mide / Что он измеряет

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

Rationale / Fondement / Justificación / Обоснование
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 fueling 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. This 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 certain sexual behaviours. Because of these underlying societal beliefs, people living with HIV are often viewed as “shameful” and thought to be “responsible” for being infected with HIV. This shaming process has repercussions beyond the individual because it greatly reduces incentives to access HIV testing or to disclose HIV status to sexual partners or family members.
 
The health sector is one of the main settings where people living with HIV—and people 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 showing change over time in the percentage of people living with HIV who experience discrimination in health-care settings and by indicating priority areas for action.
Numerator / Numérateur / Numerador / Числитель

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

Denominator / Dénominateur / Denominador / Знаменатель

Total number of respondents

Calculation / Calcul / Cálculo / Расчет

Numerator/denominator

Method of measurement / Méthode d’évaluation / Método de medición / Метод измерения

People Living with HIV Stigma Index or other survey among people living with HIV

Respondents of the study are asked whether they experienced any of the following forms of HIV-related discrimination when seeking HIV and non-HIV-specific health services in the past 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 / Fréquence de mesure / Frecuencia de medición / Частота измерения

Every 2–3 years

Disaggregation / Ventilation / Desglose / Разбивка данных

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, transgender, other, prefer not to say).
  • Key population (gay men or other men who have sex with men, sex workers, transgender people, people who use drugs).
  • Age group (8–19 years, 20–24 years, 25–49 years, 50+ years).
  • Length of time knowing HIV-positive status (0–<1 years, 1–4 years, 5–9 years, 10–14 years, or 15+ years).
Strengths and weaknesses / Forces et faiblesses / Puntos fuertes y débiles / Преимущества и недостатки

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. 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. 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 to help interpret the indicator.

People seeking HIV services at specialty HIV clinics may report fewer experiences of discrimination than people seeking HIV services integrated within general health-care services. Thus, capturing the type of clinic is recommended where possible. It is advisable to compare the findings from this indicator with other data available on discriminatory attitudes towards people living with HIV in the general population and among health facility staff and avoidance of health-care settings among people from 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 information on programmes to address stigma and discrimination in health care and their scale, and programmes to train health-care providers on human rights and medical ethics.

The People Living with HIV Stigma Index 2.0 is a standardized tool and methodology. The data used to calculate the indicator are indicative of stigma and discrimination experienced by people living with HIV in a given country or context, but the data are not generalizable beyond the people living with HIV sampled, because respondents to the People Living with HIV Stigma Index are selected using snowball sampling (versus random sampling methods).

Data from the Stigma Index 2.0 for this indicator can be complemented in years when a Stigma Index is not conducted with data from other surveys that may be conducted among and led by people living with HIV, including online surveys. Such surveys should adhere to ethical standards and good practice, including ensuring ethical approval is sought in the country, informed consent is requested from participants, and protections of participants’ privacy and data are in place. Complementary studies should also adhere to a key principle of the Stigma Index that people living with HIV lead and are at the centre of the process, defining how the study is designed, and how information is collected, analysed and used. The survey design and sampling methodology must be considered in data interpretation. Where people living with HIV and/or people from key populations are criminalized, special care to protect their safety is recommended.

Further information / Informations complémentaires / Información adicional / Дополнительная информация
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...).
 
For more on the methods and survey instrument for the People Living with HIV Stigma Index, see: https://www.stigmaindex.org/