Changing Perceptions: Reports launched from Positive Voices, the national survey of people living with HIV

Today is the official launch of the Positive Voices Changing Perceptions reports, with results from a community-led project guided by participants in the national Positive Voices survey.

Positive Voices is one of the largest representative surveys of people living with HIV to date in the world, with over 4,400 participants. The survey asks about health and wellbeing, medications, experiences with healthcare, met and unmet needs, sex and relationships, lifestyle issues and financial security.

The Changing Perceptions reports bring the survey data to life by aligning statistics with personal stories and experiences of people living with HIV in order to challenge attitudes and change perceptions about HIV. This is why it is titled “changing perceptions.” 

Megan Auzenbergs, Watipa consultant and researcher for Positive Voices at AIDS 2018

Watipa has been an integral part of this project, supporting the data cleaning and analysis from the very beginning. I collaborated with Public Health England, The National AIDS Trust and Positively UK to plan a series of workshops with Positive Voices survey participants to better understand key messages and themes that arose from the survey and to also hear personal stories that gave context to the survey data. The stories from the workshops were thematically analysed to isolate key messages which were then reviewed alongside the quantitative survey data. After this first round of analysis, a study team of Positive Voices participants came together to discuss the key themes, guide further analysis and help draft the reports.

The final product of our collective efforts is what we are launching today! The result is a series of reports focusing on Needs, Sex and Relationships, and Stigma and Attitudes that combines personal stories, data statistics and policy recommendations geared at changing perceptions around HIV.

Being part of this powerful project has been incredibly inspiring. Today, with effective HIV treatment, people living with HIV cannot pass the virus onto others and have equivalent life expectancy to everyone else. Yet despite these advances, society’s knowledge about HIV has not kept pace and widespread misconceptions about HIV persist.

I have heard first hand stories around discrimination, poverty, stress and isolation that many people living with HIV still face today in England and Wales. I have been inspired by the resilience and strength of so many of the participants in Positive Voices after hearing their stories. They gave context to my analysis.

The project also empowered me to address misperceptions in my own social networks and professional spheres. I have used this launch today to spark discussions with friends, family and co-workers to challenge their misconceptions about HIV. I hope that these reports can act as a tool for others to do the same. In other words I hope that the reports live up to their title, and change perceptions.

Regardless of background, profession, age or gender it is my hope that anyone who reads a Changing Perceptions report will be touched by the stories, pay attention to the data, and question their own perceptions about HIV. It has been an honour for me – and Watipa – to work alongside such inspiring individuals and collaborators. We are all very proud of the Changing Perceptions reports launched today, and the many months (years) of hard work to get here.

Megan Auzenbergs, Watipa Consultant

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