Rating experience of ICT-delivered aphasia rehabilitation: co-design of a feedback questionnaire

Background: Speech and language therapy can provide beneficial outcomes in post-stroke aphasia rehabilitation, and intensity is a key component of a successful programme. Information and communication technologies (ICT) may offer an option for the provision of intensive rehabilitation but the views of those undertaking this mode of rehabilitation must be considered to ensure motivation and adherence with self-administered rehabilitation. There is no consensus measure for recording feedback from people with aphasia on user experience of ICT-delivered aphasia rehabilitation. This paper reports on the collaborative development of a feedback questionnaire with people with aphasia for people with aphasia. Aims: There are three research aims (i) to develop a questionnaire to facilitate feedback on ICT-delivered aphasia rehabilitation by collaboratively working with people with aphasia in the design process, (ii) to describe the development process and the co-design techniques employed, and (iii) to explore the experiences of co-designers in the development process. Methods & Procedures: Using public patient involvement (PPI) in health research, a co-design process was employed throughout 6 group workshops. Six people with aphasia (43 to 76 years of age) with a range of aphasia severities (Western Aphasia Battery Aphasia Quotient range 24.4–83) engaged in the co-design process. The final product, an online user feedback questionnaire, was developed. Individual exit interviews were carried out with the co-designers after the workshops, and a thematic analysis of the interview data was completed. Outcomes & Results: The final questionnaire provides an outcome measure that investigates: cognitive workload, satisfaction, programme functionality and ease of use, and the level of assistance required when engaging in ICT-delivered aphasia rehabilitation. It is presented as an online survey in an aphasia-accessible format. Following the co-design experience, four themes were identified within the exit interviews: Group Dynamics, Balance of Complexity of Tasks, Reflection on Abilities and Positive Experience. The co-design process provided opportunities for social interaction with other people with aphasia and allowed co-designers to reflect on their own abilities. The workshops were considered accessible and facilitated their engagement in the co-design process. The process was inclusive and the co-designers reported feeling comfortable about contributing in the workshops and this was also noted in their feedback in the individual exit interviews. Conclusion: People with aphasia can, and should, be included in all stages of the aphasia research process and especially in the development and design of evaluation measures for use by people with aphasia.