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

Abstract

Aim

To describe research priority-setting activities for cerebral palsy (CP) that have been conducted worldwide involving people with lived experience, focusing on participant characteristics, methods employed, identified research priorities, and collaboration as research partners.

Method

The JBI scoping review approach was followed. Six electronic databases and grey literature were searched for all publications up to February 2024. We extracted study and participant characteristics, methods, and research priorities. Priorities were then categorized into prevention and cure, quality of life and community engagement, and service provision and intervention.

Results

Five studies from North America and Australia met the inclusion criteria. Participants with lived experience were most often parents/caregivers (n = 135, proportion 12–80%), with 54 (proportion 12–25%) people with CP participating in the priority-setting exercises. The studies' methods were varied, with surveys and workshops being the most common. The most reported category of research priorities was optimal intervention. People with lived experience collaborated as research partners (e.g. in aspects of study development/analysis/reporting) in four studies.

Interpretation

This review, the first to examine CP research priority-setting efforts on a global scale, identified five activities conducted to date. The small overall number of participants with lived experience of CP, originating only from North America and Australia, highlights the need for increased representation to better reflect the diverse CP community worldwide. Future projects need to address these gaps, using rigorous methodologies, and continued collaboration with research partners to ensure their perspectives shape and enhance the research agenda.