Scholarlink

Background <p>Children and adolescents with cerebral palsy (CP) may experience restricted participation across different settings. Although several instruments assess participation, the <i>Participation and Environment Measure for Children and Youth</i> (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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusion <p>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.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

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

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年7月27日

查看全文
  • Jaíza Marques Medeiros e Silva,
  • Jean Bendito Félix,
  • Viviann Alves de Pontes,
  • Lívia Ferreira Coutinho Alonso,
  • Michele Gomes da Silva,
  • Mayra Conceição Lima da Silva Paiva,
  • Hércules Ribeiro Leite,
  • Kennea Martins Almeida Ayupe,
  • Rosane Luzia de Souza Morais,
  • Paula Silva de Carvalho Chagas,
  • Ana Cristina Resende Camargos,
  • Ana Carolina de Campos,
  • Rafaela Silva Moreira,
  • Luiz Medeiros Araujo Lima-Filho,
  • Egmar Longo

摘要

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.