160 Characters: Peer-to-peer support via text message for adolescents living with HIV
In the second example drawn from Grand Challenges’ recent Adolescent Lives initiative, Siobhan Morris reveals the impact of the 160 Characters project and its role in providing peer-to-peer support via text message to adolescents living with HIV in South Africa.
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. In South Africa, over 15% of young women and 5% of young men aged 15-24 are infected with HIV. Moreover, research shows that HIV positive adolescents are at increased risk of mental health problems, which can in turn lead to poor health outcomes. Given the large number of adolescents living with HIV, there is an urgent need to develop approaches to provide ongoing support that is immediate and accessible to all HIV positive adolescents. Therefore, as part of Grand Challenges’ Adolescent Lives initiative, Dr Geordan Shannon of UCL’s Institute of Global Health partnered with The SHM Foundation to develop a solution to provide support for adolescents living with HIV in South Africa.
To do so, the team used data generated by Project Khuluma – a psycho-social support intervention that provides closed, peer-to-peer support groups to adolescents living with HIV via text message. Launched in 2013, Project 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. However, the impact of the intervention had never been comprehensively evaluated, leveraging the rich data source of the text messages. The 160 Characters Project therefore sought to bring together the insights of adolescent service users, medical science, social science, implementation science, literature, and technology to generate innovative methodologies ‘to crack’ and unlock the Khuluma text message data.
Adopting a cross-disciplinary approach, as championed by UCL’s Grand Challenges initiative, was key. As the project team noted, “adolescent lives are complex and no single discipline in isolation can fully address the often complex cultural, health and social needs of this vulnerable group.” The project therefore pioneered the use of a ‘six voices’ research framework in order to develop a methodology for analysing the text message data. Each of these six voices represented a member of the research team, bringing together insights to develop a participatory, interdisciplinary methodology. The six voices represent – adolescent service users, medical science, literature, socio-cultural, implementors, and technology.
The project was developed around the perspectives of nine Khuluma Peer Mentors – adolescents living with HIV in South Africa – who were included in the research through a participatory research cycle to make sure their voices were heard and that solutions were sustainable and appropriate. As Malebo Ngobeni, a Project Manager for The SHM Foundation in South Africa, notes, “Mentors are easily able to see beyond what is said in a text because they have lived many of the experiences that are being discussed.”
The project ran two cross-disciplinary workshops where each of the ‘six voices’ was represented by a member of the collaborating research team. In summarising discussions, it was noted that each of the different ‘voices’ took different approaches to the texts:
• Literature was interested in how communication doesn’t work more than how it works; the comic events that lead to resolution, or the tragic events that lead to miscommunication.
• Medical Science was interested in the hard end points like change to immunological states, these correlate with soft end points like self-reported adherence.
• Social Scientists looked at the individual voices and how they contribute to and are shaped by broader social issues, thinking about how best to build social dynamics so as to meet, often
• Technologists who focus on design look at how we might replicate effective interactions in real life through technology; mathematicians take a naïve approach and build systems from the
data based on mathematical language.
• Implementation Scientists thought about where this intervention fits into the health system, what does it provide that other services don’t?
• Adolescent Service Users saw the potential to change attitudes toward HIV through sharing personal experiences and building self-confidence.
Overall analysis showed that there were five key thematic concerns that arose when workshop participants analysed the data. These included self & identity; relationships & responsibility; community & acknowledgement; society & influences; and HIV. At the centre of the project, however, was the input and validation from adolescent service users themselves. The analysis highlighted that adolescents didn’t explicitly discuss or bring up HIV directly very often. Whilst the stigma of living with HIV manifests in all interactions, speaking about the issues associated with it without speaking directly allows adolescents to have a new attitude toward the virus. As the project’s final report notes, “it is precisely the fact that these [text message] support groups are removed from the anxiety and stigma of their relationships and day to day interactions inflected by their status, that makes this a space where they can explore new identities.”
Alongside the workshops, the 160 Characters Project also delivered a range of outputs over the course of the Grand Challenges’ small grant period. These included: drafting two academic papers; development of a 160 Characters website to house information, blogs, future research results, and help build a network of like-minded practitioners; a dissemination workshop to discuss next steps; and submission of two grant applications to the Medical Research Council and British Academy respectively to allow the team to pursue in-depth analysis of the data corpus from each of the ‘six voices’.
Ultimately, the 160 Characters Project aims to develop an interdisciplinary methodology for evaluating the effectiveness of online communities and digital support groups globally. In the long term, it will involve adapting and implementing the methodology to other existing online communities in partnership with governments, NGOs and national health services that use different platforms such as Facebook, forums, chat rooms, Whatsapp, or other bespoke mobile applications to meet the mental health and well-being needs of vulnerable populations. As Nikita Simpson from The SHM Foundation has remarked, “the 160 Characters Project was one of the most fascinating and innovative projects I have ever worked on. The mixed bag of people from different disciplines and geographies brought such colourful insights to the table, and really opened up the layers of meaning within the text message data. My existing interpretations of meaning within the messages was both challenged and enriched. I see this methodology now being applied to sticky problems in global health across the field.”
Similarly, Dr Geordan Shannon concluded, “the 160 Characters project means a lot to everyone involved. It is innovative, participatory, & exciting. It brings together a dynamic interdisciplinary team, puts adolescents at the heart of the project, and challenges us to redefine what healthcare really means. We are now looking to take this project to scale.”