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Clinical posts from members and guests of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) from various international medical and scientific conferences on HIV, AIDS, viral hepatitis, and sexual health.
Influencing Community Engagement in Research.
First Conference session that I have attended. really a preconference workshop for "young Researchers"
Three perspectives HIV -ve African women, traditional urban PLWHIV communities, young ( <25yrs) men of colour.
Some common themes emerged. HIV positivity and higher risk of becoming infected need to be examined within the contexts of peoples general health needs and risk activities. eg young black women feel only of interest to HIV researchers if their body contains a foetus. High maternal mortality rates in Uganda certainly relate to many factors not just HIV. Often Researchers are older white males - that young urban blacks have difficulty relating to. Often little is understood about young black or white males - how they see themselves in terms of sexual identity or sexual health risk. Wrong to transfer knowledge/ notions about what are now older black gay men to younger age groups. Recent PrEP studies with young men of colour did not engage well with at risk groups. No members of the target group were involved in the development of the studies and only belatedly involved in the implementation of the study. Best to find out first how they like to be categorised. eg MSM is not a term commonly used or related to by this group. Young men of colour will say very different things to peer researchers as opposed to older black or white gay male researchers. Rebellion is a normal part of growing up needs to be taken into account. "Rebellion" in these studies ( lack of cooperation/ failure to complete followup etc ) directly related to lack of consultation around what words were used/ recognition of individuals time constraints from their perspective etc.
Maybe we used to know this when "we" were young - but we have all gotten older and are now part of the establishment/ authority structures that we used to come up against.
Tokenism was discussed by all- Are representatives of the targets of research included in all stages of the development and implementation of social research. Are these bona fide reps or are they individuals with little actual community attachment ( there to make the research proposal look good) and therefore not really useful conduits of information back with little community accountability.