Adaptation and Translation of Cancer Stigma Scale to Evaluate Perceived and Experienced Stigma among Pediatric Cancer Patients in Mwanza, Tanzania

Abstract

Background: The Cataldo Cancer Stigma Scale (CASS) was developed to measure patient experienced and perceived stigma and was further modified for use in the pediatric patient population. This study aimed to adapt and translate a Swahili version of the CASS for use in the Tanzanian pediatric patient population to measure cancer stigma and identify the types of stigma pediatric cancer patients face. Methods: Approximately 40 items were extracted from two prior developmental and validation studies of the CASS that assessed stigma in adult patients and non-patient cohorts. The survey items, developed initially in English, underwent translation into Swahili, back-translated, reconciled, and screened for duplications. The translated items were refined using concurrent cognitive interviewing. Results: After three rounds of cognitive interviews with 15 respondents, comprehension of the survey questions was assessed and improved with all items reaching at least 80% comprehension. Additional reviews included grammar and specific Swahili word selection changes to clarify the question’s meaning. Duplications or repetition of sentences were also considered to remove questions from the survey. The final survey comprised 25 survey items with 7 stigma sub-categories. Conclusions: This study sheds light on the complex nature of cancer-related stigma in pediatric patients. For future purposes, research is needed to validate the CASS survey with a larger sample of the population, including a comparison stigma assessment to establish validity.