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Engaging and involving young people brings benefits to research studies

by Guest Author on 11 Dec 2020

Encouraging public and patient engagement and active involvement in research studies can have great benefits, especially in challenging areas. Here, Kate Sturgeon, Senior Research Nurse in the MRC Clinical Trials Unit at UCL, writes about how the Adolescents and Adults Living with Perinatal HIV (AALPHI) study did exactly this with young people living with HIV and its outcome.

The AALPHI study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PHIV) that includes young people affected by HIV. Perinatal HIV means mother-to-child transmission of HIV which may occur during pregnancy, labour and birth or breastfeeding. There is considerable anxiety among PHIV about their future health, so it is critical to feed back the findings both to the young people in AALPHI and those HIV positive children reaching adolescence now or soon. We engaged and encouraged young people to become advocates and disseminators of research findings from the AALPHI study. Detailed methods of the AALPHI study have been reported elsewhere [1].[i]

The AALPHI findings suggest that the PHIV group are very similar to the HIV negative group in terms of cognitive performance, and levels of anxiety and depression and self-esteem, and for some measures also similar to normative data from the general population, giving reassurance to young people with perinatal HIV about their long-term health.

Kate Sturgeon, Senior Research Nurse in the MRC Clinical Trials Unit at UCL

We felt it was essential that young people should be the advocates of the AALPHI study and its findings. We wanted them to take ownership and be empowered to decide how they disseminate the key messages to young people with PHIV and HIV negative young people that participated in the study and to the wider HIV community. We invited members of the Youth Trials Board, (YTB) at the Children’s HIV Association (CHIVA) and some young people that had taken part in AALPHI to attend three workshops. We provided them with the key AALPHI research findings and asked them to develop them into a format that was more easily accessible for young people.

We employed a facilitator to run the focus groups, who did a very good ‘ice-breaker’ activity at the beginning of the first day to allow the young people to get to know each other. This helped to create a relaxed, friendly, and supportive environment for the young people to voice their opinions in. Following this, they did an activity where they had to write down the key messages from the study results in their own words. This was very important for choosing language that was understandable to young people.

We successfully applied for funding to hire a filmmaker and a graphic designer the young people could work with as they wanted to develop a film and a leaflet about the findings. One of the main challenges was working with the film maker and ensuring their ideas were listened to, as the film maker had written a script which the young people proceeded to re-write in their own words, which was exactly the point of the project!

We received great feedback from the young people about the project. Most really enjoyed it and felt supported, while others would have liked more time.

A mood board created by the young people for the film and leaflet.

This project has demonstrated that if you involve young people in research that is about them, it helps ensure results are communicated in a way that young people understand and, in this case, successfully increases their knowledge about HIV. As seen in this tweet sent by a young person in clinic after reading the AALPHI leaflet.

We hope the AALPHI project will make researchers think about how they can explore imaginative ways of involving patients and the public in future studies and encourage the active involvement of patients in challenging areas, such as HIV and young people.

[i] 1. Judd A, Le Provost M, Melvin D et al. Cognitive function in young persons with and without perinatal HIV in the AALPHI cohort in England: role of non-HIV-related factors. Clin Infect Dis 2016; 63(10): 1380–1387.

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