research-article

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

Authors:

Joshua Introne,

Bryan SemaanAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 5, Issue CSCW2

Article No.: 389, Pages 1 - 35

https://doi.org/10.1145/3479533

Published: 18 October 2021 Publication History

Abstract

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.

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Index Terms

The Narrative Tapestry Design Process: Weaving Online Social Support from Stories of Stigma
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI
    2. HCI design and evaluation methods
      1. Field studies
  2. Interaction design
    1. Empirical studies in interaction design
    2. Interaction design process and methods
      1. Participatory design
      2. User centered design

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 5, Issue CSCW2

CSCW2

October 2021

5376 pages

EISSN:2573-0142

DOI:10.1145/3493286

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Apple Inc., United States

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Published: 18 October 2021

Published in PACMHCI Volume 5, Issue CSCW2

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https://dl.acm.org/doi/10.1145/3677073
Su ZKamath STirakitsoontorn PChen Y(2024)The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious IllnessesProceedings of the ACM on Human-Computer Interaction10.1145/36410218:CSCW1(1-35)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3641021
Taylor JSimpson ETran ABrubaker JFox SZhu H(2024)Cruising Queer HCI on the DL: A Literature Review of LGBTQ+ People in HCIProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642494(1-21)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642494
Li NWang BLi YPang HHan X(2024)Beyond the Swipe: Investigating the Interplay of Technology, Media, and Human Behavior in Digital RomanceJournal of the Knowledge Economy10.1007/s13132-024-01802-6Online publication date: 5-Feb-2024
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Randazzo CScott CBellini RAmmari TDevito MSemaan BAndalibi N(2023)Trauma-Informed Design: A Collaborative Approach to Building Safer Online SpacesCompanion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing10.1145/3584931.3611277(470-475)Online publication date: 14-Oct-2023
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Yong SHung MYuan CChiu CHuang MYou C(2023)Mind and Body: The Complex Role of Social Resources in Understanding and Managing Depression in Older AdultsProceedings of the ACM on Human-Computer Interaction10.1145/35795077:CSCW1(1-25)Online publication date: 16-Apr-2023
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Hinck AWithers LHinck SLee R(2022)Post-incarcerated individuals’ online narratives: stories of desistance and “success”Communication Quarterly10.1080/01463373.2022.215416771:3(219-242)Online publication date: 6-Dec-2022
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