A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM)

Abstract

Purpose

There is unprecedented opportunity to evaluate children’s participation in diverse cultural contexts, to enhance cross-cultural research, advance the delivery of culturally responsive pediatric rehabilitation, and translate new knowledge on a global scale. The participation concept is complex and heavily influenced by a child’s context. Therefore, effectively capturing the participation concept requires valid, reliable, and culturally sensitive participation-focused measures. This perspective paper proposes a structured process for culturally adapting measures of participation for children and youth with disabilities.

Methods

Elements of the Applied Cultural Equivalence Framework and Beaton and colleagues’ six-step process were used to create a guiding process for culturally adapting a Participation and Environment Measure (PEM) while drawing on two distinct cultural contexts. This process included forward and back language translations, and semi-structured cognitive interviews, to develop adapted versions of the PEM that are ready for psychometric validation.

Results

Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed.

Conclusions

The proposed process can guide rehabilitation specialists and researchers in adapting participation measures that are suitable for their culture. Such a process can facilitate scalable implementation of evidence-based tools to support participation-based practice in the rehabilitation field.

Implications for Rehabilitation

• The use of a systematic process can harmonize efforts by rehabilitation researchers and service providers to effectively culturally adapt pediatric participation measures to optimize its impact for culturally sensitive research and practice targeting participation.

• Two distinct, yet complementary, illustrative exemplars showcase the range of considerations and strategies, such as by conducting consecutive rounds of cognitive interviews, when teams use this systematic process to cultural adapt a pediatric participation measure.

• The systematic process outlined in this paper promotes rigor in achieving all elements of cultural equivalency, when feasible, to best ensure that the participation measure is suitable for use in the target cultural context.

Keywords:

• Participation
• culture
• pediatrics
• assessment
• environment

Acknowledgements

The authors thank Sana Smriti and Linaila D’Souza for their contributions to validating the Indian PEM-CY. The authors also thank Brittany Harding, as well as Vivian Villegas, Zurisadai Salgado, and Christina Sidorowych, current and former members of the Children’s Participation in Environment Research Lab at the University of Illinois at Chicago, for providing critical feedback on prior versions of this manuscript and/or assisting with references.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

The study to culturally adapt the PEM-CY for use in an Indian context was funded by the Corporate Social Responsibility (CSR) Grant [Grant ID:0959/BFL] from Bajaj Finance Ltd.