Involving young people living with HIV in disseminating research findings

25 Jan 2024

A recent patient and public involvement project engaged young people living with HIV in disseminating results of the AALPHI (Adolescents and Adults living with Perinatal HIV) study. A paper summarising the project’s approach and findings was published last week in the BMC Journal.

In clinical trials, researchers have an ethical obligation to inform all study participants about the results of the study in a way they understand. With young people, this presents its own challenges, such as a power imbalance between them and the researchers.

Involving young people in research has many benefits. It can increase their confidence, self-esteem and the belief that their views matter and can lead to change. On the other hand, it also benefits researchers by improving the trustworthiness of the research for other patients and increasing the transparency and relevance of the research.

AALPHI is a cohort study, which aims to evaluate the impact of HIV on young people living with perinatal HIV (passed on passed on from their mother during pregnancy, birth or breastfeeding), relative to HIV negative young people affected by HIV. To help young people living with HIV take ownership over the dissemination of the AALPHI study findings, researchers at the MRC Clinical Trials Unit at UCL worked together with young people to explore their preferred ways of communicating key messages to other participants and the wider community.

The team recruited a group of seven young people living with perinatal HIV from the Youth Trials Board and the Children’s HIV Association (CHIVA), as well as a few AALPHI participants. To gather their views on the best ways to communicate the results and young people’s preferred language to use, the researchers organised a series of workshops. In the workshops, the group created several resources, focusing on topics including HIV medication and adherence, mental health, sexual behaviours, and transition from paediatric to adult care.

The group worked with several creative partners, including a graphic designer to create a leaflet summarising the key messages of the study. They also collaborated with a filmmaker to produce a short film explaining the results to other participants or the wider HIV community.

This project demonstrates how researchers can use imaginative ways of involving people in areas such as HIV, and the creative materials that can be produced when engaging young people in the dissemination process.

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