Understanding the lived experience of epilepsy through creative engagement workshops: Insights beyond patient-generated questions

OBJECTIVES: Questions tell us what people with epilepsy want to know, but not what they live through. Building on previous analyses of patient-generated questions about epilepsy, this study explored whether creative engagement workshops illuminate the lived experiences that underlie information-seeking. We explored whether this approach could provide insights to guide the design of digital and other support resources that better meet patients' needs. METHODS: Twenty-two participants (12 adults with epilepsy and 10 carers/family members) attended two co-facilitated creative engagement workshops. Qualitative data from creative outputs, facilitated discussions, field notes and evaluation feedback were analysed using reflexive thematic analysis. Findings were interpreted alongside a previous analysis of 2,752 epilepsy-related questions submitted to online forums. RESULTS: Two lived-experience themes emerged: living with uncertainty and adaptation and identity. Participants described uncertainty about seizures as a pervasive influence on daily life, while many discussed adapting to epilepsy and maintaining independence and identity. Family members highlighted the broader impact on carers and family life. Peer connection and shared discussion during the workshops were consistently valued, with many describing reduced isolation and increased validation through contact with others affected by epilepsy. CONCLUSIONS: Patient-generated questions identify information needs, whereas creative engagement methods illuminate the emotional and social experiences in daily life underlying those needs. This richer understanding can guide the development of more authentic and patient-centred care. The development of online versions of the creative workshops is now underway, aiming to extend access to the benefits observed in this pilot study.