“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

Third-sector organizations, an important support for people living with HIV, increasingly use digital technology to improve service efficiency and reach. However, there is limited empirical evidence on this use by women living with HIV. The 4M Network (4MNet) is a peer-run UK-wide network of trained Mentor Mothers (MMs) living with HIV; it uses the WhatsApp platform as its primary digital communication tool. We report on a qualitative study about 4MNet MMs’ experiences of using WhatsApp, to inform the design of future digital support services. Seven telephone interviews were conducted with five MMs and two project management team (PMT) members in February 2019. Interviews were analyzed using Interpretive Phenomenological Analysis (IPA). WhatsApp was found to have several key features that provided both positive and negative use considerations. WhatsApp eased communication among MMs and supported participation in group activities despite differing schedules and geographic locations. Challenges encountered with WhatsApp included: financial restrictions to data storage and continual access; self-confidence using technology; and security and privacy concerns. Peer-led digital communication is found to be acceptable and effective for women living with HIV. Understanding barriers and valued features of existing digital platforms increasingly used among potentially marginalized groups is vital for informing inclusive innovation

Growing forward together: exploring the design of social support interventions alongside women living with HIV in the UK

The provision of social support services for those living in the UK with Human Immunodeficiency Virus (HIV) is a complex research context for critically exploring Digital Health and Design. Extant work in the HIV sector and in the field of Human Computer Interaction (HCI) has highlighted the need to further understand the contexts in which HIV digital tools and services are created and used. The design and use of digital services and tools for women living with HIV is particularly under-researched, despite women making up over half of the global population of people living with HIV. Women living with HIV are uniquely affected by intersectional inequalities that may limit or negate the effectiveness of digital interventions; these same factors increasing need for HIV social support services. In the UK, this need has exceeded service availability, as austerity measures continue to limit or reduce service provision. HIV social support providers continue to adapt; however, community-based digital innovations are largely uncaptured within academic discourse. I take a Community-Based Participatory Design (CBPD) approach to explore and build upon current HIV social support service provision (and its use of digital technologies) for women living with HIV in the UK, addressing the gap in contextual use knowledge, and pushing towards possible futures. I have combined qualitative research with design practice across four studies, working alongside UK-based HIV social support service providers to collaboratively define community knowledge and cocreate design artefacts. This approach differs from existing HCI studies on HIV that largely focus on the evaluation of researcher-led digital interventions. I argue that, within a design praxis, a researcher-led approach risks perpetuating inequalities and does not ethically engage with the communities it seeks to support. My thesis contributes empirical insights and a novel methodological extension to CBPD for Fourth Wave HCI designer-researchers working alongside marginalised communities