Abstract :

Purpose: The Cataldo Cancer Stigma Scale (CASS) was developed to measure patient experienced stigma, and further modified for use in non-patient communities. The aim of this study was to adapt a Swahili language version of the CASS for use in the Tanzanian non-patient community, to identify the current level of stigma towards children with cancerand create a measure to monitor changes in perceptions following future community based interventions.

Methods: An expert group of medical providers, community advisors and social scientists reviewed the 26 original statements in the CASS survey to determine relevancy in the Tanzanian context or Swahili language. A team of six native Swahili speakers was used to translate, back translate, reconcile, and adjudicate differences during the translation process. The final forward translation had in independent review by three bilingual translation experts to select the most appropriate translation for each item. The translated items were further refined using concurrent cognitive interviewing. Each round of interviews included five non-patient community members in the Mwanza region of Tanzania, and continued until >80% concordance reached.

Results: Three rounds of revisions were completed with 15 respondents in total. A total of 62% of questions (22/36) were fully comprehended after the initial evaluation. Additional reviews included grammar and specific Swahili word selection changes to clarify the item’s meaning. After three rounds of interviews, all questions obtained at least 80% comprehension with no further revisions required. The final survey included 23 core questions and 10 alternate questions to target community beliefs identified during qualitative interviews. These included personal responsibility items evaluating the perception that cancer is caused by witchcraft and that cancer in children is a form of ancestral punishment.

Conclusions: A Swahili adapted CASS for use in the non-patient community had good comprehension among rural and urban members of the Mwanza community. The survey will require additional quantitative validation to determine both the structural validity and reliability of the constructs. This adapted tool will allow for a meaningful intervention response evaluation that can be used in cancer stigma research throughout East Africa.