The Narrative Tapestry Design Process: Weaving Online Social Support from Stories of Stigma

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While many technology-based approaches to support people living with HIV target specific clinical goals, recent work has begun to consider how to design support in the context of HIV stigma. Here, we consider two challenges; the first, and central challenge is how to work with a small group of stakeholders to design for the much larger, but hard to access, population of HIV positive individuals. Addressing the first challenge, we introduce the Narrative Tapestry design process, which is our main contribution, and helps create a generative third space wherein stakeholders draw on their cultural knowledge to reflect on common experiences of living with HIV. The second challenge is how to design a platform that is less likely to disintegrate as people transition through phases of living with a stigmatized identity. Applying the Narrative Tapestry process led us to insights that both demonstrate the value of the design process and partially address this second challenge. We find that social support can be a critical lifeline following an HIV diagnosis, but that when people have normalized their identity, this need can give way to a desire to address stigma directly. We propose combining social support tools with a set of features that enable people to work as change-agents to address stigma in their local communities. We argue that this type of platform would help to retain senior members who can serve both as community caretakers as well as role models for newcomers.