Involving people with lived experience when setting cerebral palsy research priorities: A scoping review

Scoping reviews identify key concepts within a particular research area and types of evidence currently available. This scoping review examines how people with lived experience of cerebral palsy (CP) have contributed to setting priorities for CP research in order to characterize how the current body of literature addresses the high priority needs of those directly affected. This review specifically focused on characteristics of the participants who were involved, methods used, and research priorities identified. Five projects were identified that involved people with lived experience of CP in setting research priorities, conducted in North America and Australia.

Most participants with lived experience were caregivers, with fewer individuals with CP making up the total number of participants. The methods varied, including surveys, workshops, and webinars. The most commonly identified areas of research were related to optimizing interventions. Four of the five projects actively involved participants with lived experience of CP as research partners, influencing decisions at every stage of the research.

This review highlighted significant gaps in representation of the CP community. People with CP, particularly from low- and middle-income countries were underrepresented. Similarly, perspectives from children and young adults with CP and individuals with more complex needs, such as those using augmentative communication devices to supplement or replace speech or writing, were rarely included.

The findings emphasize the importance of including a broader range of voices in future research priority-setting projects. This can ensure that the unique needs and perspectives of all individuals with CP, regardless of background or condition severity, are reflected in the literature. Employing rigorous methods and collaborating with people with lived experience as research partners is also necessary to improve transparency and reliability of new research.