Using digital safe spaces to engage and empower young people affected by HIV/AIDS
The growing availability of mobile phones globally offers opportunities to complement and enhance HIV prevention, treatment, care and support services with tailored digital programmes that reach people through the mobiles phones they already own.
Digital interventions can make health information and services more accessible and create a tailored experience where community members can choose their own level of involvement, enabling people to be more in control of their health experiences.
The privacy and anonymity provided by digital interventions can also be beneficial for people living with, and affected by, HIV who experience high levels of stigma, discrimination and criminalisation. Digital platforms can also be used to improve the exchange of information between health service providers – building their capacity to provide improved health services to communities.
Over the past 10 years, Every1Mobile has leveraged our global expertise in human-centered design, behaviour-change theory and data analytics, to deliver engaging digital platforms that help people commit to positive behaviours which improve their well-being. In our programmes we have developed online communities to support people affected by HIV/AIDS by providing:
- A safe, anonymous place to share stories, opinions and experiences, connect with others for support and understanding.
- A tool for advocacy, gathering of voices and stories and the formation of movements of people.
Here we share some of our key learning and experiences from implementing our HIV360 youth education programme to raise awareness, improve understanding, and get young people to work together and take action on HIV and AIDS in South Africa, Namibia, Lesotho and Botswana.
“I would like to thank hiv360 for everything, reading this service has helped me a lot. I was so confused about everything but I have learnt many things on this service… I have now realised that HIV and AIDS is not a death sentence.”
Feedback from a HIV360 community member.
How can digital platforms equip young people to make informed life choices related to HIV and AIDS?
HIV360, funded by European Union and The African Pulse (TAP), was an HIV and AIDS youth education programme that aimed to raise awareness, improve understanding, and get young people to work together and take action on HIV and AIDS. Close to 60,000 young men and women from South Africa, Namibia, Lesotho and Botswana joined the HIV360 online community. The platform was also made available to youth in Tanzania, through a partnership with Internet.Org.
HIV360 provided a safe space for people who are living with HIV
Through compelling interactive digital content, services and engagement strategy we changed young people’s knowledge, attitudes and behaviours – for instance providing anonymous expert support to combat myths and provide facts on HIV; motivated young people to go for a HIV test, disclose status or seek support; facilitate open dialogue around areas of stigma to challenge negative social norms and mobilise real-world outreach to support people living with HIV.
Young people engaged with our HIV360 digital platform which:
- Increased their awareness and understanding of HIV and AIDS
- Challenged their own perceptions and societal stereotypes
- Allowed them to discuss and debate issues within a safe and supportive online community
- Gave them a voice and the chance to share their views
- Inspired and motivated them to do things for themselves, taking action personally within their local and national communities
Content on digital platforms can be tailored to suit important factors in someone’s life, which has the potential to bring about more person-centred health experiences. This means people are more likely to engage with services or access information. One of the biggests successes of HIV360’s online community was the questions received from people in the Q&A section. These questions provided a unique way to interact with the target communities and directly address their needs and concerns.
What made HIV360 a successful online community?
HIV360 was accessible via the mobile phones young people already owned and responded to young people’s lived digital experience and digital literacy levels. Mobile was selected as the method of intervention to most effectively engage and mobilise both in-school and out-of-school youth given the popularity of mobile technology with these groups. HIV360 was also integrated to be available on MXit, a highly popular social networking portal and educational platform with over 12 million youth in Southern Africa.
The HIV360 community successfully engaging large numbers of young people specifically because it became a ‘digital home’, meeting 5 fundamental needs:
- A hunger to learn and to access clear, youth-friendly and reliable information on HIV – in a language and tone young people could relate to.
- A need for a safe, anonymous place to share stories, opinions and experiences, connect with others for support and understanding.
- A need to access professional services and support anonymously online or on the ground – and to hold service providers accountable.
- A need to belong and be counted – to join a movement of like-minded people and contribute to change in an achievable way.
- An accessible ‘user-friendly’ experience that meets youth wherever they are in their digital world, whatever device they are on and addresses any technology barriers they may face.
“My parents died of hiv because they kept it away and never told anyone it was sad losing them i want to encourage those living with hiv not to be ashamed it’s not the end of the world”.
Feedback from a HIV360 community member.
What have we learned from building engaged online communities?
- Interactive platforms ensure that people are not simply passive audiences, but rather are active participants who support each other and influence the content of the programme.
- An engaged community doesn’t just view content, they also build self-efficacy, shift perceptions and take direct actions that result in genuine changes in their lives.
- A digital community is a powerful tool for advocacy and citizen engagement around local or global dialogues.
- Digital interventions, such as distance learning, service signposting, peer ratings systems, access to online experts for advice, as well as e-vouchering for physical services can generate greater demand for HIV services.
- Creating an online community that can be re-engaged again and again with new content and tools is a cost effective way to deliver ongoing engagement without ‘starting from scratch’ each time.
- Through peer-to-peer support and digital safe spaces, people can pass their learning on to each other, spread knowledge in their community and continue to implement behaviours that improve their quality of life in the long term.
- Digital interventions ensure that we gather data via online engagements to track and measure behaviour change. We can track real-time people’s activities including e-learning participation, online survey responses, posting their own content and visits across the site, to better assess what is working well and where course correction is needed to drive project performance, behaviour change and engagement with target communities.
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