The patient and public involvement of adults with cerebral palsy in doctoral research during the pandemic: ref lections on the process, chal lenges, impact and experiences

ABSTRACT

Background: Cerebral palsy (CP) is a lifelong disability, where people experience complications as they age in addition to their underlying condition. Including the views of people with CP through public and patient involvement (PPI) ensures that research is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the research process. Further, there is no guidance on how to involve people with CP in PPI during the COVID-19 pandemic. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic. Methods: This paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the researcher and adults with CP. Results: A panel of adults with CP was established and consulted throughout the research to support development of the research question, study documentation, data collection, analysis, interpretation and dissemination of findings. The researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research. Conclusion: Involving adults with CP positively impacts the research process and ensures meaningful change. Reflective findings may help other researchers involve adults with CP and adapt to remote PPI processes.