Cultural adaptation of a pediatric functional assessment for rehabilitation outcomes research

Kristen E. Arestad, David MacPhee, Chun Y. Lim, Mary A. Khetani

Significant racial and ethnic health care disparities experienced by Hispanic children with special health care needs (CSHCN) create barriers to enacting culturally competent rehabilitation services. One way to minimize the impact of disparities in rehabilitation is to equip practitioners with culturally relevant functional assessments to accurately determine service needs. Current approaches to culturally adapting assessments have three major limitations: use of inconsistent translation processes; current processes assess for some, but not all, elements of cultural equivalence; and limited evidence to guide decision making about whether to undertake cultural adaptation with and without language translation. The aims of this observational study are (a) to examine similarities and differences of culturally adapting a pediatric functional assessment with and without language translation, and (b) to examine the feasibility of cultural adaptation processes. The Young Children's Participation and Environment Measure (YC-PEM), a pediatric functional assessment, underwent cultural adaptation (i.e., language translation and cognitive testing) to establish Spanish and English pilot versions for use by caregivers of young CSHCN of Mexican descent. Following language translation to develop a Spanish YC-PEM pilot version, 7 caregivers (4 Spanish-speaking; 3 English-speaking) completed cognitive testing to inform decisions regarding content revisions to English and Spanish YC-PEM versions. Participant responses were content coded to established cultural equivalencies. Coded data were summed to draw comparisons on the number of revisions needed to achieve cultural equivalence between the two versions. Feasibility was assessed according to process data and data quality. Results suggest more revisions are required to achieve cultural equivalence for the translated (Spanish) version of the YC-PEM. However, issues around how the participation outcome is conceptualized were identified in both versions. Feasibility results indicate that language translation processes require high resource investment, but may increase translation quality. However, use of questionnaires versus interview methods for cognitive testing may have limited data saturation. Results lend preliminary support to the need for and feasibility of cultural adaptation with and without language translation. Results inform decisions surrounding cultural adaptations with and without language translation and thereby enhance cultural competence and quality assessment of healthcare need within pediatric rehabilitation.