"When people get open about HIV, it's easier to save others" : Herausforderungen und Lösungswege in der HIV-Primärprävention und Aids-Versorgung bei Sub-Sahara Migrationsgemeinschaften in der Schweiz

Introduction:
Although Sub-Sahara migrants had been overrepresented in Swiss HIV prevalene statistics in the late
1980s already, they had been hardly recognized in prevention interventions and publications. Only when
the figures raised high in the late 1990s, the Federal Office of Public Health (FOPH) mandated a rapid
assessment intervention plan and based on its recommendations commissioned a pilot intervention
project for outreach peer education, called AFRIMEDIA, executed jointly by Swiss Red Cross and Swiss
Tropical Institute between fall 2002 und spring 2006. This late recognition of Sub-Sahara migrants is
surprising, since the Swiss HIV/AIDS strategy has always been innovative and based on a learning
strategy ? in contrast to a control strategy ? in order to manage an irradicable virus in the contemporary
society. Thus, by silencing the magnitude of the problem, open and public discussion was rather inhibited
instead of enhanced.
Aim:
This qualitative study is affiliated with the AFRIMEDIA project. The study aims to examine the process
of peer education in order to contribute to a better understanding and improvement of peer education
targeting Sub-Sahara migrants in Switzerland. Due to the high HIV prevalence, HIV-infected African
migrants were also included in the study in order to increase the understanding of their life worlds.
These insights are particularly relevant for clinicians working with AIDS patients from Sub-Saharan Africa.
This study also aimed at clarifying methodological issues when studying marginalized populations
involved in sensitive research topics.
Method:
A comprehensive literature review on published and gray literature from Western European countries
was conducted aiming to provide a detailed view about HIV-prevention and care issues with Sub-
Sahara migrants living in Western Europe. In a second step, 40 qualitative interviews were conducted in
English, German, or French with an a priori selection of three participant gropus: 10 HIV-peer educators,
10 HIV-infected migrants, and 20 healthy migrants. A focus group discussion with peer educators and
repeated interviews with an HIV-infected participant were based on principles of particpation and openness.
Analysis was guided by iterative content analysis using qualitative software MAXQDA. Support for
interpretation was received from an African social science student. The study was accepted from the
ethics committee of the canton of Basel. Good practice in qualitative health research is particularly highlighted
in a specific chapter.
Results:
The main category identified is "visible person ? invisible virus". Visibility of persons is represented in
peer education, a method which enhances participation with populations concernced and thus supports
information dissemination and consultation among these populations. African HIV peer educators in this
study are willing to be active in an epidemiologically urgent situation Their main access strategy is being
visible within the African communities by developing competencies in outreach strategies particularly to
marginalized migration groups. Besides peer educators from formally structured projects, there are also
semi-official and unofficial peer educators, including HIV-infected participants, who provide HIV prevention
information. Planned as well as unforeseen target groups are reached through various creative
methods. However, peer educators also are confronted with a work overload due to a "magnet function"
within these communities and uncertain project structures.
The main characteristic of living with the HIV infection is the invisible virus. HIV-infected participants are
faced with a chronic illness which is usually diagnosed in an advanced disease stage. The diagnosis is
followed by a shock about negative consequences on their individual and social lifes. Howver, thereafter,
most participants manage to have more stable than instable phases. Invisible viral activity and "normal"
appearance lead to confusion of living with an attributed stigma but physical integrity and nondetectable
viral loads, yet still being HIV-infected. Accordingly, the participants together with family
members and other supportive systems had to adapt the coping mechanisms, including living much
longer than expected and shaping their medical and social environment towards their needs. Although
signs of HIV disease were mostly absent, individuals and families are at risk for or experienced discrimination
based on AIDS as an illness of shame. Some participants experienced discrimination in Switzerland
as well as in African countries. It is remarkable, that all HIV-infected patients have at least one
supportive source, but this network might be too loose for those with precarious legal status, and consequently
they can hardly manage social and financail hardship in times of ill-health. These issues need
to be considered by HIV health care professionals when developing cross-cultural health assessment
guidelines for an increasing patient population.
In the analyzed literature, the concepts of HIV pmriary prevevtion and AIDS care are characterized by
sharp distinction. However, empirical data from this study shows, that there are relevant crossover activities: a) HIV peer educators are willing to supoprt HIV-infected Africans, and b) HIV-infected participants
practice primary preventive strategies within their families and ithin the wider African commuinty.
These data provide insight, that participants combnie prevention and care activities in a continuum between health promotion and care. However, this cominbation is self-initiated and hardly promoted by
Swiss health care institutions so far.
Regarding the research methods chosen, it seems surprising that participants were easy to recruite,
despite raising a sensitive topic in a marginalized migrant population. However, offering them an opportunity
to talk in a safe and non-discriminatory environment allowed them to discuss their opinion and
concerns.
Discussion:
Visibility of all three categories of peer education enhances accessible HIV prevention information for Sub-Sahara migrants despite being a marginalized group in the African diaspora. However, being visible as peer educator can be problematic, because of the issues which arise in their private lives and their work as peer educators. Nevertheless, peer educators serve as a bridge between the Swiss Stop AIDS
campaign and African communities' understandings and experiences with the HIV epidemic.
Also, an invisible virus can be problematic, because it decreases the risk perception of non-infected
people, who are not accustomed to the physical "normal" appearance of HIV-infected persons in Western Europe. Thus secondary prevention might be inhibited, because the appearanse is guiding for safe or unsafe sex decisions. But invisibility of viral activity can be helpful, if it means physical and emotional
stability, and thus allows conducting an acceptable live despite a stigmatising illness.
Finally, particularly community-based study designs with participative options for migrants in the study
team can provide a framework for being visible. The researchers with African origin aim to access African communities in a safe and non-discriminatory environment for HIV/AIDS research, but they include information about primary prevention and refer also to medical care at the same time.
Conclusion:
The study results show, that acknowledging primary prevention needs also requires timely recognition of care issues with epidemiologically heavily concerned populations. Such integrated prevention and care management strategies ought to be seen as part of an ongoing learning strategy of managing the contemporary HIV epidemic in Switzerland. Opinions regarding
contents and methods from migrants as well as prevention specialists are key factors in order to tackle and promote HIV issues with African communities. This strategy acknowledges the changing epidemiological pattern. And it allows to continue long standing traditions in Swiss HIV prevention by integrating prevention, therapy and solidarity also for African migrants.