Health Equity + Wellbeing

Cultivating Hope and Reducing Stigma for Adolescents Living with HIV

Centering the experiences of young people living with HIV in designing an intervention that promotes life-saving antiretroviral therapies.

Adolescents living with HIV in Nampula, Mozambique are much like adolescents elsewhere in the world. Many of them live with their parents, go to school, spend time with their friends, and care deeply about belonging. But, the stigma of an HIV diagnosis can be daunting enough that some young people who are living with the virus lose the will, desire, or support from loved ones that pushes them to adhere to the medication that can enable them to live healthy, full lives. Although more than 10% of Mozambicans are living with HIV, the virus continues to be surrounded by stigma, shame, and discrimination.

In 2019, we partnered with ICAP at Columbia University, a global public health center based at the Mailman School of Public Health that supports programs and research on HIV/AIDS prevention, care and treatment. Core to our approach was co-design. We closely collaborated with young people in Nampula who were living with HIV and invited them to be designers of the solutions. Together we launched Aqui Para Você—which translates to here for you” in Portuguese— to better understand how to support adolescents and young people living with HIV in adhering to life-saving antiretroviral treatment (ART).

During this collaboration, we heard stories from young people who had felt ashamed to be seen taking their medication, going to a clinic for appointments, or sharing their diagnosis with friends and family. Many of them didn’t have reliable sources of information on sex, relationships, and HIV, or a trusted adult who could answer their questions. 

Ultimately it was never about reminding them to take the pill. It was about them knowing that their life is worth living.

Lauren Weinstein, Design Director

The stigma and misinformation surrounding HIV/AIDS made it so that their fear of social death—complete rejection and isolation from friends, family, and community—rivaled the fear of death itself. It became clear that a peer-to-peer support group would be only one part of a larger solution.

We realized that access to a peer group wasn’t enough to encourage young people to take these meds, we needed to externally address the stigma, too. And so we asked them, ‘Within the community, how can we dispel the myths and fears that exist around living with HIV?’

Hitesh Singhal, Design Lead

We worked with the co-designers to design, prototype, and test over 14 strategies including messaging campaigns for schools and community spaces, tools for providers to use in clinics, videos to enhance medical literacy, and interactive posters and radio ads to tackle myths. After rounds of iteration and improvement, we had finalized a multi-faceted campaign and peer-to-peer service model aimed at dispelling misinformation, tackling stigma, and fostering a sense of belonging.

Combined, these interventions delivered on our objective to encourage youth to take their medications, a tangible outcome for the community. A cluster-randomized control trial is currently ongoing to evaluate the effectiveness of this model in increasing retention in care, ART adherence, and viral suppression among adolescents and young people at 12 health clinics in Nampula. We’re hopeful that the project and its results demonstrate opportunities for using human-centered design to support global health innovation.

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