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

Abstract

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.

Date of Award	3 Sept 2021
Original language	English
Awarding Institution	Northumbria University
Supervisor	Shema Tariq (Supervisor), Abigail Durrant (Supervisor) & Lynne Coventry (Supervisor)