Illuminating Narratives of Young Wheelchair Users: Lived Experience Insights for Framing Child-Centred Inclusive Mobility Design

Abstract

Lived experiences and individual interpretations of reality can be effectively communicated through narratives. As such, capturing and understanding narratives can be considered of critical importance in human-centred design, as they form the essence and perspective a design is built upon and are thus essentially embedded into the designed outcome. The role of narratives in design becomes particularly critical when designing with or for end-users whose narratives tend to differ from mainstream dominant societal or disciplinary narratives due to differences in lived experiences. In order to empower such communities and ensure designed entities can be meaningful and desirable as well as usable for them, it is important to proactively uncover, interrogate and incorporate a diversity and plurality of end-user narratives into the design process. This study demonstrates how this could be applied in the field of Inclusive Paediatric Mobility (IPM) Design, by setting out to uncover and interrogate the narratives of nine young wheelchair users aged 4-18 years. In-depth narrative interviews are conducted and analysed to unveil five high-level narrative themes including: Independence, Freedom and Choice Beyond Mobility; Social Inclusion and Support Networks; Identity, Customisation and Self-Expression; Accessibility and Adaptations; and Resilience and Determination. An interpretive phenomenological analysis is then conducted to identify archetypal dominant, counter and alternative narratives that exist around each theme. The study elucidates the complexity, duality and dynamicity of end-user narratives and highlights how wheelchairs can act as a vessel for narratives which transcend the primary concept of mobility, encompassing a deeper sense of identity and selfhood, enriched with values, feelings, and opinions related to various areas of life. As well as offering insights into the lived experiences of young wheelchair users, the narratives identified through this study could be adopted in practice by inclusive mobility designers, stakeholders and policymakers to inform sense-making and opportunity framing processes, to ultimately create more meaningful child-centred healthtech solutions and empower young wheelchair users.