Listening, learning, and (co‐)leading: Addressing the experiences of falls among people with cerebral palsy across the lifespan

Children and young people with cerebral palsy (CP) grow up, and it is critical to think about the supports needed for them across the lifespan. People with CP are often at risk of falls, which can have significant consequences. Beyond the physical impacts of the falls, people with CP may also experience psychosocial and emotional impacts. Esterley et al. describe the experiences and impacts of falls among people with CP across the lifespan.1 The authors share important findings of falls on the people themselves, and the external context including the influence of others and society, and the environment. This commentary offers reflections on how to build on and apply the findings from Esterley et al. by highlighting the importance of listening and learning from the stories of people with CP, and co-leading the development of supports that they view as necessary and meaningful across their lives. We should consider how to create space to listen to and learn from stories shared by people with CP. In this commentary, 'people with CP' refers to people across the lifespan, including children, young people, and adults. They have often emphasized how they want their perspectives to be heard, especially by their families and healthcare professionals.2 The International Classification of Functioning, Disability, and Health (operationalized by the F-words of fitness, functioning, friends, family, fun, and future) can be applied to have holistic discussions with people with CP.3, 4 In the cases of falls, healthcare professionals and families may initially focus solely on addressing the physical impacts of the falls. Alongside these physical impacts, Esterley et al. share findings about how people with CP also experience psychosocial and emotional consequences. For example, they may feel embarrassed from falls and fear going out in public. These risks of falls can have an impact on their participation. Moving forward, we should think about how we can co-lead with people with CP and their families. Participatory action research and engagement approaches emphasize the co-creation of research and supports with researchers alongside people with lived and living experiences as partners and families. First, people with CP can partner with researchers and healthcare professionals to inform the programs and supports, such as educational workshops, that might be helpful to raise awareness on how to minimize the impacts of falls. Esterley et al. describe how the techniques of falls can be taught to people with CP, especially starting early in childhood. Ongoing education about fall techniques and use of mobility aids can help to reduce the risks or minimize injuries from falls. Second, people with CP can help inform the design of community programs and activities that are inclusive for all. As Esterley et al. have identified, public spaces should be built to be accessible. Third, policies can and should be implemented that prioritize and mandate the accessibility and safety of public spaces. For example, sidewalks should be shoveled in a timely manner during the winter. The engagement of people with CP to partner with researchers, healthcare professionals, and policymakers is invaluable in identifying key priority areas to address the risks of falls and enhance participation. In conclusion, Esterley et al. describe the experiences and impacts of falls on people with disabilities. Future research should consider ways to engage with people with CP by listening and learning from their narratives, and co-leading research with them. This approach to engagement will help to prioritize meaningful areas in healthcare, education, and policies to address and minimize the impacts of falls among people with CP across the lifespan. I would like to acknowledge and thank Amanda St. Dennis, an adult with CP for her insights, and Peter Rosenbaum for his guidance with writing. Not required.