What shapes participation in cerebral palsy? A Co-produced PEM-CY scoping review with mothers with lived experience

Background Children and adolescents with cerebral palsy (CP) may experience restricted participation across different settings. Although several instruments assess participation, the Participation and Environment Measure for Children and Youth (PEM-CY), a caregiver-report instrument, is a robust tool for evaluating both Participation and Environment. This study aimed to map Participation and Environment in the home, school, and community settings of children and adolescents with CP using the PEM-CY, in partnership with a Public and Patient Involvement (PPI) group, to ensure that the review reflects the experiences and priorities of families. Methods This scoping review was structured according to the guidelines provided by the Joanna Briggs Institute (JBI) and adapted to incorporate contributions from the PPI group, comprising mothers of children with CP, three physiotherapists, and one occupational therapist. Partner mothers contributed to developing the guiding research question, selecting search keywords, reviewing the results, interpreting the findings, and refining the review’s implications and conclusions. Searches were conducted in six electronic databases (Medline/PubMed, Embase, Scopus, Web of Science, Lilacs, and CINAHL). We included original observational studies that examined Participation and Environment using the PEM-CY. Data were collected using a custom extraction form and presented in tables and figures. Results Twelve studies from different countries were included. Participation was higher at home and lower in the community, both in frequency and involvement, while the desire for change was most pronounced in community activities. Children with CP showed lower participation and less environmental support than peers without disabilities, and higher motor function and physical activity were associated with greater participation. Conclusion Children and adolescents with CP face greater challenges in participating in activities, particularly in community settings, when compared to their peers without disabilities. Higher levels of physical activity, environmental adaptation, and family and clinical support increases participation among children and adolescents with CP. The inclusion of the PPI group added social relevance and sensitivity to the theoretical process of the review, helping ensure that the findings better reflect the needs and priorities of families. Retrospectively registered: 10.17605/OSF.IO/VPQM5.