Puerto Rican understandings of child disability: methods for the cultural validation of standardized measures of child health

Abstract

Validating the cultural context of health is important for obtaining accurate and useful information from standardized measures of child health adapted for cross-cultural applications. This paper describes the application of ethnographic triangulation for cultural validation of a measure of childhood disability, the Pediatric Evaluation of Disability Inventory (PEDI) for use with children living in Puerto Rico. The key concepts include macro-level forces such as geography, demography, and economics, specific activities children performed and their key social interactions, beliefs, attitudes, emotions, and patterns of behavior surrounding independence in children and childhood disability, as well as the definition of childhood disability. Methods utilize principal components analysis to establish the validity of cultural concepts and multiple regression analysis to identify intracultural variation. Findings suggest culturally specific modifications to the PEDI, provide contextual information for informed interpretation of test scores, and point to the need to re-standardize normative values for use with Puerto Rican children. Without this type of information, Puerto Rican children may appear more disabled than expected for their level of impairment or not to be making improvements in functional status. The methods also allow for cultural boundaries to be quantitatively established, rather than presupposed.