“Until people start dying in droves, no actions will be taken”: perception and experience of HIV-preventive measures among people who inject drugs in northwestern Russia

BACKGROUND: The HIV epidemic among people who inject drugs (PWID) in Russia continues to spread. This exploratory study examines how HIV-prevention measures are perceived and experienced by PWID in the northwestern region of Russia. METHODS: Purposive sampling was used to obtain a variety of cases that could reflect possible differences in perception and experience of HIV-prevention efforts. We conducted 22 semi-structured interviews with PWID residing in the Arkhangelsk and St. Petersburg regions. RESULTS: The main sources of prevention information on HIV for PWID were media campaigns directed to the general population. These campaigns were effective with regard to communicating general knowledge on HIV but were ineffective in terms of risk behavior change. The subjects generally had trust in medical professionals and their advice but did not follow prevention recommendations. Most informants had no or very little prior contact with harm reduction services. On the level of attitudes towards HIV prevention efforts, we discovered three types of fatalism among PWID: “personal fatalism” - uselessness of HIV prevention efforts, if one uses drugs; “prevention-related fatalism” - prevention programs are low effective, because people do not pay attention to them before they get infected; “state-related fatalism” – the lack of belief that the state is concerned with HIV prevention issues. Despite this fatalism the participants opined that NGOs would do a better job than the state as they are “really working” with risk groups. CONCLUSIONS: As HIV prevention campaigns targeted at the general population and prevention advice received from medical professionals are not sufficiently effective for PWID in terms of risk behavior change, prevention programs, such as community-based and peer-based interventions specifically tailored to the needs of PWID are needed, which can be achieved by a large expansion of harm reduction services in the region. Personal communication should be a crucial element in such interventions in addition to harm reduction materials provision. Training programs, peer outreach, and culture-change interventions which try to alter widespread fatalistic norms or attitudes towards their health are especially needed, since this study indicates that fatalism is a major barrier for behavior change.