Development and Adaptation of a Patient-Centered Communication Survey for Parents of Children With Cancer in Guatemala

Abstract

PURPOSE Surveys to assess patient and family experiences of pediatric cancer care have been primarily developed and validated in high-income Western settings with English-speaking participants. However, 90% of children with cancer live in low- and middle-income countries. We sought to develop a survey focused on pediatric cancer communication for use in a low-literacy population in Guatemala, including adaptation of many previously validated items. METHODS A multidisciplinary team developed a quantitative survey on the basis of a theoretical model of important components and influences on pediatric cancer communication. The original survey included established items previously used in high-income settings and novel questions designed for this study. The survey was translated into Spanish and pilot tested with parents of children receiving treatment at Unidad Nacional de Oncologia Pediatrica in Guatemala City, Guatemala, from April-June 2019. Cognitive interviews were used during pilot testing, and the survey was iteratively revised throughout this process. RESULTS Early in testing, Guatemalan parents tended to choose answers at the extreme ends of response categories and socially desirable responses. Ultimately, a visual aid was developed to accompany three-item Likert scale response options. This allowed for successful administration of the survey instrument, resulting in moderate variation of response options and similar proportions to those generated when the original five-item responses were used in parent populations from the United States. CONCLUSION Appropriately adapted surveys are necessary to understand patient-centered communication among pediatric oncology populations in low- and middle-income countries. Eventual validation of such tools will enable cross-cultural studies and comparative analysis of results.