Navigating the tensions of integrating lived experience in participatory healthcare design

Abstract Despite growing interest in participatory approaches to healthcare design, the integration of people’s lived experience—direct, first-hand understanding of a certain condition, situation, or identity—remains a key challenge to meaningful participation. Through an interview study with 23 patients, designers, family caregivers, and healthcare professionals involved in participatory healthcare design initiatives, the authors identify underlying tensions associated with leveraging lived experiences in healthcare design and investigate how existing strategies for integrating lived experience relate to these tensions. In doing so, this research offers insights for practitioners regarding ways of strategically navigating tensions when integrating people’s lived experience through design in complex healthcare contexts.