An HIV diagnosis is more than a medical issue because a positive test result brings about many questions and fears. Since 2015, the Buddy project has been helping HIV-positive individuals to live with the infection better after being diagnosed. Heike Gronski, who coordinates the project as a consultant in the Life with HIV department at Deutsche Aidshilfe, talks about what makes this form of support so unique and discloses the important elements of successfully implementing such a project.
UNIVADIS: How did the Buddy project come about? What was the background and the goal of the initiative?
The initiative was started by HIV-positive people who wanted to do something about self-stigmatization of individuals living with HIV. Self-stigmatization occurs when people are not able to get a realistic picture of living with HIV after the test. When they feel guilty, are ashamed and are thinking of old images of HIV. When they believe that life as they know it is over because they are sick, that they can no longer achieve their goals and that they will be at the edge of society in the future. This is how the idea to offer people with HIV post-test result contact with other affected people to talk about life with HIV came about, meaning peer-to-peer.
UNIVADIS: How do HIV-positive individuals find their Buddy?
The heart of the project is the website, buddy.hiv. There, the Buddies introduce themselves and present their stories and those who are interested can make contact with a Buddy of their own choice. Information about the project and the website can be found in specialized practices, AIDS agencies, in test centres and public health offices in the form of flyers, business cards and posters.
UNIVADIS: What kind of support do HIV-positive individuals receive from their Buddies, that doctors and professional counsellors cannot provide?
The program closes a gap between the medical and social work programs. The specialized practices cover the medical care and the AIDS agencies offer professional advice. The Buddy program starts one step earlier: I got a positive test result, had the first conversations with my doctor and can now turn to a person who has been living with the infection for many years. I can contact them directly and just meet for a coffee. When preparing our Buddies for their task, we also make sure that they notice when a person has an increased need for counselling. They have sufficient experience to specifically refer to a counselling centre. Or if someone does not have a specialist doctor, they will refer to the next specialized practice.
UNIVADIS: What areas is this peer-to-peer contact particularly important for?
HIV does not have a cure as of yet, so you have to build the infection into your life. At the beginning when they get infected, people are often afraid about the trivial things of day-to-day life. Will I still be able to have sex or find a partner despite HIV? Am I still able to work and do I have to let my employer know about my infection? How can I defend myself against discrimination? Is it true that HIV medications also protect my partner from getting HIV? Can I still have children? Can I grow old with HIV? These are all questions that come after the test result and which can also be answered by a doctor or consultant. However, seeing these answers come out of the mouth of a person who has been living with HIV for 5, 10 or even 20 years, who is sitting in front of me animated and fit and talks about their life, is more authentic and lessens the fear about the future.
UNIVADIS: How is the quality of the consultation ensured by the Buddies? How are they selected and trained?
The participants are trained on two weekends. This primarily aims at getting to know each other. We teach communication fundamentals and about HIV and we train by using role play. The participants have to research what counselling programs and specialised medical practices are available in their region in order for them to be able to make referrals. We define the tasks and indicate the specifics of the peer-to-peer contact. We clarify the framework: Do not meet at home, rather meet in public places or at counselling centres. We also observe to what extent the future Buddies have processed their own diagnosis in such a way that they can support others. And we provide networking between the Buddies.
We have feedback conversations at the end of the training. In almost every training we have the situation where we do not include people in the project because we do not consider them suitable. For instance, we suggest that they engage in other HIV-related projects that are more suited for their skills.
UNIVADIS: How is data privacy ensured when people with HIV turn to a Buddy, and is the Buddy subject to confidentiality?
We guarantee confidentiality. All Buddies that work as volunteers at Aidshilfe sign a contract with us. Every year the Buddies must make a conscious decision that they want to collaborate with the project. No personal information is exchanged through our contact page. Contact is made by e-mail, but no consultations are allowed via e-mail. This will change in the coming year: We are planning on setting up a secure online consulting platform where online exchanges are possible as well.
UNIVADIS: The project was launched in Germany in 2015. How many Buddies are active currently, and how many affected people contact Buddies?
The number of Buddies is currently at around 50. We train new Buddies every year. People’s life circumstances change, so there is a certain fluctuation. On the other hand, there are between 100 and 150 contact situations with our Buddies every year.
UNIVADIS: How is the project evaluated?
Two years ago, we commissioned an external person to evaluate the entire project, and we had very positive results and good guidance on how we could further develop the project.
In addition, continuous evaluation tools are available. The Buddies fill out a questionnaire after each contact: What was the conversation about, information about age and gender, sexual orientation, how long ago was the test result received. And then there is an option for project users to give us feedback. We evaluate both tools on a regular basis.
UNIVADIS: What are the results of the evaluation?
Most inquiries come from people who just received their test result. There are few differences with regard to the place where they live. Inquiries come from urban centres but also from rural areas. According to epidemiology in Germany, most inquiries come from gay men. Because the website and many of the Buddies are multilingual, we were able to increase the requests coming from people with a migrant background. The most important topics are the handling of HIV in the partnership, sexuality, positive coming out, non-transferability of the infection while undergoing therapy and discrimination experiences. We get very positive feedback from the people seeking advice. There are many touching stories. People write that the meeting was an “aha” moment for them and that they have been able to come to terms better with the fact that they are HIV-positive.
UNIVADIS: When the Buddy project was launched, it was the only initiative of its kind in the world. Are there comparable projects in other countries?
We must differentiate here. Of course, the peer-to-peer approach in consulting is neither new nor unique, and there are a lot of Buddy projects as well. What makes our Buddy project special are three things. Firstly, the project has been developed with participation in mind from the beginning. The idea, concept, implementation and continuous development are supported by people with HIV. It sees itself as a community project, and there is a very high degree of identification and ownership among those involved. The second special thing is the possibility of having direct contact between the Buddy and those interested through the website. You don’t have to look for a counselling centre first, and there are no doctors filtering the program. The third special thing is that only people with HIV are available to talk to people with HIV. Other Buddy projects provide support for people with HIV by committed HIV-negative individuals. It’s not so much about the peer-to-peer approach, rather it's about low-threshold assistance for people living with HIV.
We were approached about our project several times. There was interest from Lithuania and Austria. The Lithuanians then opted against the peer-to-peer approach because they feared that they would not find people with HIV willing to get involved. The Austrians are planning a local project and want to mediate themselves. One can thus say that our project in this constellation is probably unique. But it would be great to see similar projects in other countries, and we would love to exchange ideas. We would also love to share the know-how that we’ve gained.
UNIVADIS: What advice would you give to initiators in other countries? What needs to be taken into account when starting such a project?
I think you need a group of people with HIV, together with whom you can develop that, and with whom you can talk about what other people with HIV need and what the Buddies themselves can achieve. For instance, it's about how the Buddies can maintain their anonymity online. That was also an important issue for us.
The important things are often country-specific. But I always think it is essential to plan and structure with an HIV-positive community. I believe that is the recipe for success of this project. Because people with HIV know best how it feels to get the test result, what is needed, where to find other HIV-positive individuals, how to raise awareness about the project. This achieves a very large target group proximity, and the Buddies stay with it.