Stigma Index

Informed consent and confidentiality

• 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:

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).