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Cultural adaptation of the young children's participation and environment measure (YC-PEM) for use by Hispanic families of young children with special health care needs (CSHCN)




Arestad, Kristen Elizabeth, author
Khetani, Mary, advisor
Sample, Pat, committee member
MacPhee, David, committee member

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Culture informs the occupations in which children engage as well as how they are enacted. Hence, occupational therapists need assessments that are culturally relevant in order to deliver culturally competent practice. Current approaches to cultural adaptation of assessments present with three major limitations: (a) use of inconsistent translation process; (b) current processes assess for some, but not all, elements of cultural equivalence; and (c) limited evidence to guide decision making about whether to undertake cultural adaptation with and without language translation. To our knowledge, this is the first study to systematically develop and compare multiple versions of a culturally adapted questionnaire for potential use by a Hispanic population of young children with special health care needs (CSHCN). The purpose of this study is two-fold: (a) to examine similarities and differences of culturally adapting an occupation-centered pediatric assessment with and without translation; and (b) to examine the feasibility of developing a culturally adapted assessment with and without translation. The Young Children’s Participation and Environment Measure (YC-PEM) underwent cultural adaptation processes (i.e., language translation and cognitive testing) to establish Spanish and English pilot versions for potential use by caregivers of young CSHCN of Mexican descent. Following language translation to develop a Spanish YC-PEM pilot version, 7 caregivers (4 with Spanish as their primary language; 3 with English as their primary language) completed cognitive testing to inform decisions regarding content revisions to the YC-PEM Spanish and English pilot versions. Participant responses were content coded to established cultural equivalencies (i.e., semantic/idiomatic, item, conceptual). Coded data were then summed to draw comparisons on the number of revisions needed to achieve cultural equivalence between the two pilot versions. Feasibility was assessed according to resources required, data collection procedures, and data quality. Results suggest that a greater number of revisions are required to achieve cultural equivalence for the translated (Spanish) version of the YC-PEM. However, issues concerning conceptual equivalence were identified in both the Spanish and English versions. Feasibility results indicate that language translation processes require high resource investment, but may increase translation quality. However, use of questionnaire (i.e., paper, PDF) cognitive testing versus interview methods (e.g., phone, face-to-face) may have limited data saturation. Study results lend preliminary support to the need for and feasibility of pursuing cultural adaptation of the YC-PEM with and without language translation. Larger and more diverse samples are needed to examine the effects of acculturation status on revisions needed to achieve cultural equivalence. Also, interview methods may help improve data quality and confirm study findings.


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