Adaptação transcultural e validação para o uso no Brasil da Medida da Participação e do Ambiente - Crianças e Jovens (PEM-CY)

Abstract

Introduction: Participation is defined by the International Classification of Functioning, Disability and Health (ICF) as the individual's involvement in everyday situations, being determined by intrinsic factors and the environment. Objectives: To carry out the cross-cultural adaptation of the Measure of Participation and the Environment - Children and Youth (PEM-CY) to Brazilian Portuguese; and to analyze their psychometric properties in a sample of children and youth with and without disabilities, aged 5-17 years. Methods: This is a methodological study developed in two stages. The first one comprised the process of cross-cultural adaptation, which was divided and executed in five stages, following the methodology widely used and recommended by Beaton and Collaborators. The stages were divided into: (I) Initial adaptation to Brazilian Portuguese; (II) Synthesis of the versions; (III) Back-translation; (IV) Committee of experts; (V) Parent understanding and back-translation for final approval. The second stage was characterized by the application of the questionnaire to 101 parents and/or caregivers of children and youth with and without disabilities from 3 Brazilian states, in order to attest their psychometric properties, as well as to identify supposed differences in participation and characteristics of the environment at home, at school and in the community between the two groups. Results: Linguistic and grammatical modifications were made to facilitate fluency, interpretation and comprehension in reading the instrument, as well as to make the expressions more equivalent to the language in the first stage of the study, giving rise to the definitive version of PEM-CY Brazil, which was approved by the authors of the original version and is commercially available on CanChild's official website. In the second stage, of the 101 children and youth recruited, 62 had a disability and 39 presented a typical development; 45.5% were female and 54.5% were male, with a mean age of 9.36 years (+/- 3.47). The internal consistency of the instrument varied from good to excellent when considering all the participation items and the environment, respectively, at home (α = 0.873 and α = 0.760), at school (α = 0.877 and α = 0.948) and in the community (α = 0.889 and α = 0.855). There were significant differences between groups in terms of the number of activities performed in the three scenarios, indicating that children with disabilities participated in fewer activities at home (p = 0.000), at school (p = 0.001) and in the community (p = 0.000 ). Children with disabilities were less involved than their non-disabled peers in school setting activities (p = 0.034). In relation to the environment, the disabled group perceived higher barriers at home (p = 0.001) and fewer aids in the home (p = 0.000), school (p = 0.002) and community (p = 0.011) settings than the non-disabled group. Conclusion: After the transcultural adaptation process, the Brazilian version of PEM-CY can be considered a valid and reliable instrument to measure participation in activities at home, at school and in the community, as well as the characteristics of the environment. At the same time, the instrument made it possible to identify differences between children and youth with and without disabilities in relation to participation and the environment.