Virtual Spaces of Care – Khuluma as a ‘home’ - A Social View on 160 Characters

In August, the 160 Characters Project workshop was held in London. The project is an innovative model for analysing text message support data using a ‘six voices’ framework; combining insights from medical science, literature, socio-cultural, implementation, technology and participatory. Experts from the ‘six voices’ framework analysed the text messages shared between the participants. The workshop created intense debate on what is good communication and how does each discipline measure successful interaction in the lives of people living with HIV. In the workshop, it became clear the echoes between disciplines; voices re-shaped and reiterated ideas expressed by other disciplines, yet each new formulation brought rich divergences in understanding the data, its limitations, and the future for better implementation of the technology.

Following the success of this dialogue, we have collected a series of blog posts from each of the six voices. This will provide an insight into the findings of the workshop, as well as foregrounding the potential of each discipline for thinking through the key questions of what is good communication, how can technology be used to create supportive communication and can this be leveraged to help improve the lives of people living with HIV.

For the third instalment, Research Associate and Architectural Designer, Mikaela Patrick, provides us with her insights into the Khuluma text message data.

Virtual Spaces of Care – Khuluma as a ‘home’ by Mikaela Patrick:

I was asked to participate in the 160 Characters workshop through my work with STEMA. STEMA is a multi-disciplinary team of researchers looking at innovation and health in low-resource settings. My background is in architecture and I currently work as a researcher and people-centred designer, with a focus on the relationship between architecture and health. This relationship naturally lends itself to a broader conception of health, one beyond the biomedical – that is both social and political. Projects like Khuluma address these broader issues.

The Six Voices Framework brought together people from clinical and global health specialties, social science, literary experts, technologists, the people running the programme and its peer mentors. My interest is in people-centred design, so I think it was particularly powerful to work with the peer mentors in the workshop. What struck me was how they described Khuluma as a home. The space it occupies for the participants, albeit virtual, offers a sense of community - a safe space and one of shared empathy that we could argue makes the intervention a space of care.

So what are the spatial components of Khuluma? Khuluma offers immediate access to care or support – it is simply a message away. The care is delivered through a mobile phone, within a person’s immediate physical and environmental context. The intervention is important in a context where they lack access to care, or face social or cultural barriers to accessing that care, due to vulnerabilities, insecurities safety and stigma around the condition of HIV or a sense of isolation within their physical community. Therefore, the space it offers is important.

The virtual space is a social space, a conversation, somewhere where someone could feel proximity to another person beyond a conventional physical proximity. This is an incredibly powerful tool; we can develop technologies to expand on these capacities. This kind of tool does not need to follow restrictions around physical distances, boundaries and borders – however it requires a shared language of communication. That language, the different ways in which people could communicate across the platform is a way in which the design could evolve.

This idea of language, and the words that signify communication, was a strong part of the discussion within the workshop. It was interesting how a sense of independence and basic social contact was more important to people looking after themselves than being instructed by an external voice on things like taking medications. Particularly within the context of designing interventions with and for adolescents, this sense of independence, ownership or empowerment is a key driver.

For me, this is the interesting indicator of how Khuluma could grow and scale-up. Working in a multi-disciplinary way with the Six Voices Framework generated questions about the multiple ‘expressions’ of Khuluma, how it could grow and adapt, but all of these options could have spatial components. Spatial analysis could offer ideas of how Khuluma could extend its environment in two ways:

  • It could look at how the service is used, what areas of a settlement a message is coming from – this would give insights into coverage and could allow for interpretation of the physical and environmental context in which people are using the service.
  • It could be used to look at areas of need or vulnerability around HIV through the mapping of population demographics, identifying possible areas to target the intervention.

Overall, I think working in multi-disciplinary ways in groups such as the Six Voices can generate exciting insights into the complex nature of work around health and care in resource-constrained settings. First and foremost, however, working and designing with the people that want, need and use the platform is the best way to ensure it will be accessible, acceptable, affordable and achievable.

I also think it raises questions around how we interpret architecture in the context of health and social care; spaces could be physical, virtual or both and can, and should, extend into the environments we live in. An environment of care.

Text: Mikaela Patrick

Illustration: Maggie Li;

Published on: 18-10-2018

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