Ethical research

The People Living with HIV Stigma Index is not intended to be an abstract academic exercise that is done "to" our community. It encompasses a participatory spirit for all those involved. People living with HIV will be at the centre of the process as both interviewers and interviewees and as drivers of how the information is collected, analyzed and used.

The interview process

In this initiative, the process is just as important as the product.

There are three features of the People Living with HIV Stigma Index that make the process unique:

  • It is GIPA in action. From the very beginning, the index has been developed and will be implemented by and for people living with HIV. This includes every stage of the process-from development of the index, interviewing, analysis and advocacy.
  • ‘Side by side' interviewing
  • Proactive system of referrals

The People Living with HIV Stigma Index, like other studies that collect data from people, must observe certain standards with regard to ethical issues and data protection. In each country where this survey is carried out, those responsible for conducting the study should make sure that it conforms to that country's ethical and data protection requirements. The "User Guide" does not replace such requirements, but it provides some general guidance to be followed in all contexts in which the People Living with HIV Stigma Index is being conducted.

Informed consent and confidentiality

These two issues are of critical importance for ensuring ethical research.

Informed consent:

The principle of informed consent means that each interviewee must be asked to consent to the collection and processing of their personal data after being fully informed about the nature of the study. This means who is involved in it, how the data will be processed and stored, and what the data will be used for.

The interviewer must explain to the interviewee that they are free to refuse to be interviewed, to withdraw from the interview at any time, or to refuse to fill in a particular question or set of questions.


Confidentiality is concerned with the issue of who has the right to access data provided by the participants of a research study. When conducting research, one should always ensure that appropriate measures are in place so as to make it absolutely certain that the information disclosed and particpants' identities are kept in confidence.

To secure confidentiality the index questionnaires and informed consent forms will be identified by a unique identifying code (as opposed to the name of the interviewee). Each code will include a country code of two digits; a network (of people living with HIV) code of two digits; an interviewer code of two digits; an interviewee code of two digits; and the date on which the interview occurred, of six digits (day/month/year).


The People Living with HIV Stigma Index is intended for use as an empowering research tool for developing evidence based advocacy by and for people living with HIV.

The Index has been developed through extensive field testing in pilot studies and when implemented in its entirety (as outlined in the User Guide) has shown to be a valid and reliable tool. It is not intended for any other use. The coordinating partnership of the index accepts no responsibility for applications of the index beyond the intended purpose outlined and additional ethical and reliability tests should be undertaken if the index is adapted in part or in whole.

About the questionnaire

The questionnaire explores ten key areas:

  • experiences of stigma and discrimination and their causes,
  • access to work and services,
  • internal stigma,
  • rights, laws and policies,
  • effecting change,
  • HIV testing,
  • disclosure and confidentiality,
  • treatment
  • having children and
  • problems and challenges. 

The user's guide supports the interviewers from the networks of people living with HIV. It ensures consistency, confidentiality and sensitivity in the use of the questionnaire.