Inside the project - The Perspective of 2 Interviewers

“positive stimmen 2.0”: Since May 2020, a survey has been conducted across the Federal Republic among people with HIV to find out about their experience with discrimination. Isabel and Collins form part of this voluntary team and are themselves HIV-positive, like all other interviewers.

As the title already reveals, “positive stimmen 2.0” follows on from an earlier project. In 2011, interviews were conducted for the first time across Europe with HIV-positive people about their experience with exclusion and stigmatisation. Did you also participate in this community research project at the time?

Isabel: I myself was interviewed at the time. When I saw that interviewers were being recruited for the new series, I registered straight away. I was interested in getting to know the other side as an interviewer.

Collins: I am joining in for the first time. The idea behind the project – collecting discrimination data which is backed by academic research through a major survey – is very important to me. Only when we know how and where people with HIV still face discrimination can we target our actions against this.

In my community, I have repeatedly found that HIV-positive people do not tell anyone about their infection, do not exchange ideas and experiences and are therefore left alone to deal with their illness by themselves. I therefore hope that “positive stimmen” will help us to find ways of helping such people deal with their infection.

Have you two been committed to the HIV community for a long time?

Collins: I have worked for AfroLebenPlus since 2007, an association of HIV-positive migrants throughout Germany, and am also active in prevention.

Isabel: I repeatedly take part in specific events such as the hetero meetings and the HIV-Congress “Positive Begegnunen”, but am not active in an organised form. However, I am also part of a network with many people on a private level who only very rarely resort to Aids support or not at all. In this context, my self-help work takes place on a private level to a certain extent.

How were you prepared for your task with “positive stimmen 2.0”?

Collins: We were trained for the project in the spring with a three-day seminar and intensively familiarised with the questionnaire and its processing.

Isabel: For example, we also got to know strategies there to help us cope with possibly difficult emotional situations, such as how to recognise whether a break in the conversation would be appropriate or how we can protect ourselves from becoming too emotionally involved. Here, we were able to benefit from the experience of the interviewers of the first “positiven stimmen” study.

What course do the interviews take?

Collins: We have a fixed catalogue of questions which I go through at the beginning, in order to clarify any issues about understanding right from the start. If people are then willing to be interviewed, I ask them to sign the necessary declaration of consent.

Isabel: By the way, the questionnaires are not only in German, but are also available in English. In addition, interviews are also possible in Russian. For other languages, we are reliant on interpreters.

Collins: Until now, I have mainly conducted the interviews in English because many migrants are not yet able to express themselves well in German.

To what extent can the interview candidates contribute issues and aspects which are not included in the questionnaire?

Isabel: This is possible. At the end of the questionnaire, there is a special space for this in order to note such issues in writing. More than half of my interview candidates took advantage of this opportunity.

How long does an interview take?
Collins: This varies. Some people answer the questions very quickly, others need more time and want to use the opportunity to talk about their experiences. This can also become quite emotional and we then take a short break. On average, an interview takes about an hour.

Isabel: At first sight, the catalogue of questions is very extensive. However, some of the questions only affect certain groups of persons, for example people using drugs or bisexual or homosexual people. The interviewees are also free to leave individual questions unanswered.

In the meantime, I have met with 16 people for a conversation like this and the majority took the opportunity to talk about their experiences behind the apparently simple answers. This can be very liberating and a demonstration of esteem – for both sides, the interviewer and the interviewee.

These conversations are not recorded and are also not included in the questionnaire?

Isabel: No, unless it is so important that the interviewee says “This must be made known or be disclosed in the course of such a study” Then we can record it in text form at the end of the questionnaire.

Where do the interviews take place?

Isabel: This depends on the wishes of our interview partners. It is important that the conversations take place in a location where the interviewees feel safe and protected. Some wish to conduct the conversation at home, but we also use the premises of the local Aids support organisations, for example.

The interviewees probably tell you very personal things. How do you deal with the issues of confidentiality and anonymity?

Isabel: Confidentiality is guaranteed in every case.

Collins: Everything we talk about is confined to the room in which the conversation takes place.

Isabel: Anonymity is also guaranteed. For example, the declaration of consent does not have to be signed, but can instead merely be initialled or no statement made at all. Questionnaires are only forwarded for academic evaluation if they were filled out together with the interviewee. They do not contain personal details. Questionnaires therefore cannot be attributed to particular persons.

Have you been surprised by the experiences the interviewees have reported or have your expectations been confirmed?

Collins: I found two life stories very moving. I interviewed a gay man who has left his home country because he knew that if people found out about his homosexuality, they would kill him. In another conversation, a young man described what it is like living together with his family. When he goes to the toilet, he has to disinfect everything because his relatives are afraid of being infected by him. He must even use different crockery. It is hard to imagine what life under these circumstances must feel like.

Isabel: I started by asking my closer acquaintances for interviews. In most cases, I therefore knew a significant part of their story. In the meantime, I have also conducted conversations with interview partners sent to me by the Deutsche Aidshilfe. Sometimes I find it alarming to hear how much discrimination still exists, but also how embarrassing an HIV-diagnosis often still is. This once again showed me the importance of hearing and magnifying these voices.

Have you also interviewed people who, by contrast, have experienced hardly any discrimination and who live positive lives with HIV without negative experiences?

Collins: Yes, and this is naturally very pleasing. For example, one man told me about his family’s reaction to the HIV diagnosis. They had no problem at all with it, and said “It’s not your fault, we are not afraid and we will always be there for you”.

So people who have not experienced discrimination due to their HIV infection can also register themselves for the interviews?

Isabel: Correct, because the survey is designed to reflect a cross-section of how people with HIV live in this country and what moves them.

The Corona pandemic also had effects on this project. The interviews started later than originally planned. Can the interviews also be conducted by telephone or as a video conference?

Isabel: Conversations must be conducted face-to-face, so telephone conversations are not planned. However, video-chats via Skype or Zoom are in principle possible.

At personal meetings, we naturally ensure safe distancing and compliance with hygiene regulations. We nevertheless try to implement the project as intensively as originally planned.

What do you hope to learn and which consequences will follow on from the project?

Collins: Many people still fear discrimination and hesitate to go to places where other people with HIV meet and talk about their experiences. I hope the project will help them find ways of combatting loneliness. The first important step is to accept the infection.

Isabel: For one thing, I naturally hope that the evaluation of this survey comes to the conclusion that discrimination has receded since the last survey, and society has made further progress on this point. In addition, I hope that the study will once again bring forth such good ideas and initiatives. At the time, “positive stimmen” provided the initial impetus for the Buddy-Project, which provided freshly diagnosed people with the support of other people with HIV in the initial period after the infection.

Thank you very much for this conversation!

By the end of 2020, the aim is to question 500 people living in Germany with HIV from different walks of life about their experience with stigmatisation and discrimination within the framework of  “positive stimmen 2.0”.

Interested people can contact the project team:

“positive stimmen 2.0” forms part of the international “PEOPLE LIVING WITH HIV (PLWHA)-Stigma-Index Projects, which asks people with HIV across the world about their experiences with discrimination.

The cooperation project of Deutsche Aidshilfe (DAH) and the Institut für Demokratie und Zivilgesellschaft (IDZ) cooperates closely with the networks and other self-help organisations of people who line with HIV as well as the local Aids associations and projects.

The project also includes an online survey which can still be completed by people with HIV until 31 October 2020. It supplements the peer-to-peer interviews regarding content. Direct link to the survey: 

Information and results of the first “positive stimmen” survey are available here:

Translation from German: Literaturtest.