Experience-based co-design of a smartphone app for post-stroke aphasia self-management: a process evaluation

Experience-based co-design (EBCD) is a well-established method to engage patients, family members and healthcare professionals in the co-design of interventions. A key principle of EBCD is equal partnership. For adults with acquired communication disabilities, additional measures are required to ensure authentic, rather than tokenistic, engagement. The aim of this study was to evaluate the co-design process from the perspectives of co-designers (individuals with aphasia (impaired language/communication), family members, speech pathologists), and researchers (speech pathologists and technology developer) participating in EBCD workshops, with respect to co-designer involvement, engagement, experiences and personal outcomes. Workshops represented the co-design phase in the EBCD of a novel technology for self-management of post-stroke aphasia.

Mixed methods process evaluation within a convergent-parallel research design was conducted. Twelve co-designers participated in 15 EBCD workshops. Co-designers completed personal outcome surveys and semi-structured interviews pre- and post-workshops, with a pulse survey midway. Researcher reflections were recorded during a debriefing session. Survey data were analysed using descriptive statistics and Wilcoxon signed-rank tests for pre-post comparisons. Semi-structured interviews and researcher reflections were analysed using the Framework Method and qualitative content analysis.

Overall, findings indicated co-designers had positive experiences during EBCD and believed their ideas were integrated into the interface design. Suggestions to improve communication accessibility were provided.

With appropriate support, persons with aphasia can meaningfully participate in EBCD.