Participatory design in sensitive contexts: A proposal for a conceptual framework

AbstractAbstractThere has been an increasing focus on Participatory Design (PD) and design research involving ‘vulnerable groups’ and sensitive topics in recent years. Existing approaches, however, focus on working with discrete ‘vulnerable groups’ and/or sensitive topics, with limited work capturing shared learnings and key principles across these. In this position paper, we discuss our work specifically focusing on enabling participation from people perceived as vulnerable to engage on sensitive research topics, sharing key themes from project examples across three different contexts. We present a proposal for a conceptual framework synthesising key principles for Participatory Design in Sensitive Contexts. The framework emphasises: valuing lived experience as expertise; rights-based ethos foregrounding the political, ethical and social commitment of PD; asset-based design promoting individual and collective agency, voice and empowerment; and attuning participation with a focus on relationships, dynamics of engagement and wellbeing, to create appropriate conditions for genuine participation and transformation.Keywords: Participatory designvulnerable groupssensitive topicsrights-based ethosasset-based designgenuine participationtransformation Disclosure statementNo potential conflict of interest was reported by the authors.FundingThe paper was developed based on reflections across multiple projects which were funded through different channels. The examples provided refer to three projects in particular. Two of the these: ‘Game Jam: Co-designing a game-based learning tool on internet and social media safety with young people with learning disabilities’ and ‘Ritual Respect: Co-designing care and emotional support around miscarriage’, were supported by the Digital Health and Care Institute funded by the Scottish Funding Council. The third project ‘Future Transitions in Palliative Care’ was funded by the Scottish Universities Insight Institute.Additional informationNotes on contributorsSneha RamanSneha Raman is a design researcher with expertise in developing participatory approaches to engage with complex social and systemic issues. She is a Research Fellow, and Subject Lead for Transformation Design at the Innovation School, The Glasgow School of Art. Her research focuses on participatory design for future health, care and wellbeing, with a particular interest in engaging with citizens and communities with diverse abilities, sensitivities and lived experiences, and a concern for plurality and agonism in PD.Tara FrenchDr. Tara French is a design psychologist and interdisciplinary researcher with expertise in facilitating transdisciplinary collaborations in the context of care and wellbeing. Her recent projects have involved large scale co-design in the context of palliative care and exploring design-led, system-wide innovation in health and social care integration. Tara is interested in how design can foster spaces for empathic exploration and empowerment when exploring ‘taboo’ or sensitive subjects. Tara is the Technology and Digital Innovation Lead at Scottish Care exploring how participatory and human rights-based approaches can support transformation in the independent social care sector.