What shapes participation in cerebral palsy? A Co-produced PEM-CY scoping review with mothers with lived experience
8 affiliations
- 1Universidade Federal da Paraíba (UFPB)
- 2Universidade Federal de Juiz de Fora (UFJF)
- 3Family Partner
- 4Universidade Federal de Minas Gerais (UFMG)
- 5Universidade Federal do Espírito Santo (UFES)
- 6Universidade Federal dos Vales do Jequitinhonha e Mucuri (UFVJM)
- 7Universidade Federal de São Carlos (UFSCar)
- 8Universidade Federal de Santa Catarina (UFSC)
Abstract
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.
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BibTeX
@article{silva2026what,
title = {{What shapes participation in cerebral palsy? A Co-produced PEM-CY scoping review with mothers with lived experience}},
author = {Jaíza Marques Medeiros e Silva and Jean Bendito Félix and Viviann Alves de Pontes and Lívia Ferreira Coutinho Alonso and Michele Gomes da Silva and Mayra Conceição Lima da Silva Paiva and Hércules Ribeiro Leite and Kennea Martins Almeida Ayupe and Rosane Luzia de Souza Morais and Paula Silva de Carvalho Chagas and Ana Cristina Resende Camargos and Ana Carolina de Campos and Rafaela Silva Moreira and Luiz Medeiros Araujo Lima-Filho and Egmar Longo},
journal = {BMC Pediatrics},
year = {2026},
month = jul,
doi = {10.1186/s12887-026-07282-8},
url = {https://doi.org/10.1186/s12887-026-07282-8},
note = {CC BY},
}
RIS
TY - JOUR
TI - What shapes participation in cerebral palsy? A Co-produced PEM-CY scoping review with mothers with lived experience
AU - Jaíza Marques Medeiros e Silva
AU - Jean Bendito Félix
AU - Viviann Alves de Pontes
AU - Lívia Ferreira Coutinho Alonso
AU - Michele Gomes da Silva
AU - Mayra Conceição Lima da Silva Paiva
AU - Hércules Ribeiro Leite
AU - Kennea Martins Almeida Ayupe
AU - Rosane Luzia de Souza Morais
AU - Paula Silva de Carvalho Chagas
AU - Ana Cristina Resende Camargos
AU - Ana Carolina de Campos
AU - Rafaela Silva Moreira
AU - Luiz Medeiros Araujo Lima-Filho
AU - Egmar Longo
PY - 2026
DA - 2026/07/01
JO - BMC Pediatrics
DO - 10.1186/s12887-026-07282-8
UR - https://doi.org/10.1186/s12887-026-07282-8
AB - 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.
SN - 1471-2431
ER -