Talking the Walk (Along): Lessons learned from engaging with children with cerebral palsy and their parents for investigating lived experiences of falls: Co-design of ‘The Walk-Along Project’

Background: Children with cerebral palsy (CP) regularly fall over, but causes of day-to-day falls are not well understood. Further insight may be revealed by engaging with children with CP and their families during patient and public involvement and engagement (PPIE) and adopting a participatory, child-centred perspective. PPIE involves designing, conducting and disseminating research with the public and has been used in health research with children, but has not been utilised to inform research of falls with children with CP.
Objective: This paper aims to critically discuss experiences of PPIE with children with CP and their parents, who engaged with a researcher to inform a novel adaptation of the walk-along interview method for investigating how real-world falls occur.

Methods of Engagement: Eight children with CP (8-17 years) and six parents engaged as PPIE participants in consultations and activities with the researcher about a walk-along interview method, specifically tailored to children with CP.

Outcomes of engagement: PPIE participants identified places to walk (e.g. parks), how to conduct interviews (e.g. ‘stop and talk’) and areas of questioning, that contributed to a walk-along interview protocol. These outcomes demonstrate that PPIE generated unique insights for a protocol specific to children with CP.

Discussion: Strength was brought to PPIE through developing good relationships and using creative activities. Challenges during PPIE included contrasting views and availability, which were managed through adaptation, communication and consensus.

Conclusions: This work supports and expands previous PPIE and child-centred work, reinforcing that children and parents can positively help create impactful research designs, by developing and refining a method to collect real-world information about falls, specifically tailored for children with CP. We offer critical reflections on conducting PPIE, showing that engaging in PPIE to refine a protocol can offer unique insight into the worlds of children with CP and strengthen the design of future studies.