Using experience-based codesign to coproduce aphasia rehabilitation services: Study protocol

Abstract

Introduction Aphasia is an impairment of language that occurs in 30%-40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6-12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them. Methods and analysis This research will be coproduced with people with aphasia (n=30-60), their families (n=30-60) and speech pathologists (n=30-60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured. Ethics and dissemination Human Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.