Project New Generation (PNG+) are a group of young people living with HIV who serve as the voice of the youth involved in the REACH study. Made up of two groups, one based in St. Petersburg and the other in Irkutsk, and supported by local psychologists, this group of 20 bring to the forefront, issues that the youth living with HIV are directly affected by. The activities of PNG+ are led by the Penta PPI team.
Pre-COVID-19, the PPI team held a number of in-person meetings with the young people, running training on Cohort Studies and understanding REACH, exploring the issues faced by young people living with HIV, Hepatitis C and TB and then looking at ways to share the findings from the study. Given the circumstances the world finds itself in today, the meetings moved to Zoom to continue the engagement, using similar techniques and approaches but tailoring the meetings to suit a digital format. Doing this has allowed the work to continue.
During the meetings, time was spent discussing how the key findings reflect what it’s like to be a young person living with HIV in Russia, and the group decided on the best ways to share the findings with young people living with HIV and their families across Russia. In between virtual meetings, the young people have been engaged via WhatsApp, sharing images and information to discuss and images and ideas for them to comment on. The PPI team have created an Instagram profile, @penta.youth which is being used to share the young people’s work and findings. The learning from this work it is now being rolled out across Penta’s other PPI work.
Young people having a voice and understanding of cohort studies and research is extremely important. The group reported that they enjoyed being a part of REACH and learning about studies. This group are keen to share their experiences and educate their peers and the general public. There is still much work to do to continue to build the relationship between them and medical professionals and develop robust youth engagement at all levels. Over the lifespan of REACH have seen the group grow and develop their soft skills such as confidence, teamwork, and communication. Our hope is to be able to continue engaging them with activities and opportunities in the future.
Here is to many more adventures with PNG+!
Find out more about PNG+ here