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Making the Case for HIV Literacy

With developments in self-testing for HIV and STIs, the expansion of drugs used for prevention and treatment and an increase in apps and digital technologies, sexual and reproductive health and wellbeing is rapidly changing. This means that the information people need to know about good sexual and reproductive health, where they can get it and how they can use it, is becoming more complex. It’s also not clear how people – and wider communities – can be best supported in accessing, understanding and using this information.

I recently published a community report – Making the Case for HIV Literacy – from the Developing HIV Literacy project. This was a collaborative project which sought to understand how to support the HIV literacy needs of communities in Scotland in the face of changes in HIV prevention, like PrEP and U=U. Supported by a Scottish CSO Fellowship, the project worked with a group of research, clinical, health & community practitioners, and community members to better understand what HIV literacy was and how to support HIV literacy in Scotland.

Through this three-year project, we established the Developing HIV Literacy Framework, drawing on the professional and personal experiences of practitioners and communities in Scotland, and thinking about how to address wider social factors that affect HIV literacy, such as stigma, homophobia, barriers to access and engaging with others. Our Framework shows that HIV literacy is not only about individuals having the ‘right knowledge’ and ‘set of skills’, but that it is also dependent on supportive partners, peers and communities, engaging health services and a wider environment in which HIV prevention and care is not constrained by social and structural barriers. This means that repeating simple HIV messages is not enough to improve HIV literacy.

The report also describes how we drew on the Developing HIV Literacy Framework to inform our work around PrEP, and to develop a community tool that was used to support the roll out of PrEP in Scotland in 2017. Our work in supporting PrEP community conversations highlights how HIV literacy is affected by factors such as stigma & discrimination (homophobia, transphobia, racism, sexism), non-HIV health experiences, rights and access to services, navigating professional and organisational boundaries and concerns about how organisation of health services.

We suggest that supporting good HIV literacy needs to be based in ongoing dialogue and learning within and across communities and health practices. Practitioners, activists, educators and community members need to consider:
– the role of wider social networks of people accessing HIV information and the domains and settings in which this HIV information will be used
– the multiple and creative ways in which this information will be accessed, taken up and shared and should be open to how communities can and will modify information to suit their needs.

This project is indebted to the many community, clinical, third sector, activist and academic partners (in Scotland, England & Canada) who took part in the project workshops, meetings, discussions, testing materials, qualitative data collection, and who listened to presentations. Particular thanks to project partners from: HIV Scotland, NHS Greater Glasgow and Clyde, Terrence Higgins Trust Scotland, Waverley Care, NHS Grampian, aidsmap, University of Glasgow & the University of Edinburgh.

To read the report online, go to https://www.research.ed.ac.uk/portal/files/109716752/Making_the_Case_for_HIV_Literacy.pdf. If you would like to request printed copies of the report, please contact me.