160 Characters is a participatory and interdisciplinary collaboration between the SHM Foundation and UCL’s Institute of Global Health aimed at generating insights from the 60 000+ text messages sent by adolescents living with HIV in South Africa in peer-to-peer support groups through Project Khuluma.
In adolescents, aged 10 to 19 years old, HIV is the leading cause of death in Africa and the second leading cause of death of adolescents globally. ALWHIV are at increased risk of mental health problems, which can in turn lead to poor health outcomes such as poor medical adherence. But lack of resources in South Africa mean these adolescents aren’t getting the psychosocial support they need.
The SHM Foundation has developed a promising solution in the Khuluma model – a psychosocial support intervention that provides closed, peer-to-peer support groups to ALWHIV via text message. Launched in 2013, Khuluma has supported 160 adolescents in Cape Town and Pretoria, generated more than 60,000 text messages, and recorded increased social support and self-reported medical adherence, and decreased internalised stigma.
The 60 000+ text messages generated by the Khuluma text message corpus is the closest we can come to accessing what adolescents are saying to each other in private spaces within ethical constraints, in order to better understand their experience of living with HIV and their mental health.
The 160 Characters Project was launched in 2017 during a workshop where we asked ‘Can we create a different way of looking at the Khuluma text messages?’ It’s clear that literary and socio-cultural methods are important in picking up on the nuances of the message data; however the sheer volume of messages necessitate the use of ‘big data’ methods. Hence, the 160 Characters Project brings together the interdisciplinary insights of adolescent service users, medical science, social science, implementation science, literature, and technology through the Six Voices Framework to ‘crack’ the Khuluma text message data.
The ultimate aim of the 160 Characters Project is to develop an interdisciplinary methodology for understanding how online communities and digital support groups work to improve mental health globally. Plus, understanding the mental health needs of the Khuluma participants will allow us to design more appropriate interventions and policies for adolescent populations.
160 Characters is led by a core research team based in London including Dr Geordan Shannon, Anna Kydd and Nikita Simpson; who are supported by an interdisciplinary board of advisors including Chair, Prof. Maurice Biriotti, Prof. Sarah Fidler, Prof. Linda-Gail Bekker, Prof. Susanne Kord, and Ursule Kajokaite. Insights from STEMA have come from Des Tan, Hector Durham, Mikaela Patrick and Nicole Minckas. Insights from Rocket.Chat have come from Isabella Russell. Insights from the wider SHM team have come from Esmé Nicholson, Cassandre Greenberg and Yasmine Uddin. However, at the core of the project is the participatory voice of Khuluma’s adolescent peer mentors – particularly Desmond, Andani and Given, who are supported by a South African research team including Malebo Ngobeni, Tebogo Konkobe and Dr Millicent Atujuna.