Measuring Stigma in Pediatric Oncology: A Cross-Sectional Analysis of Three Global Sites

Abstract

PURPOSEStigma contributes to fear and shame, resulting in delays in care-seeking behavior among individuals with cancer. As a social construct, stigma is affected by language, religion, culture, and local norms. This study explored pediatric cancer stigma at the time of diagnosis across diverse settings through the adaptation of two stigma measures.METHODSThis study was conducted with adolescents and caregivers of children with osteosarcoma and retinoblastoma at three centers in Jordan, Guatemala, and Zimbabwe. The Stigma-related Social Problems (SSP) and the eight-item Stigma Scale for Chronic Illness (SSCI-8) measures were translated into Arabic, Spanish, and Shona and contextually adapted for use with adolescents and caregiver proxies. Adapted measures were pilot-tested and iteratively revised.RESULTSExtensive adaptations were made to both measures to make them relevant to the local pediatric contexts. The final measures were used in nine patients and 28 caregivers. The exploratory analysis found that domain-specific and overall scale scores for both measures indicate a higher level of stigma than those found in previous studies (SSP: patient [51.23], caregiver [40.74]; SSCI-8: patient [50.41], caregiver [49.78]). Paired, patient-caregiver proxy responses were analyzed, with disagreement between the pairs for both scales.CONCLUSIONAdapted measures detected high levels of stigma among patients with pediatric cancer and their caregiver proxies and demonstrated a lack of concordance in the reports. This suggests the importance of studying stigma in this population and the need to ask patients about their stigma without using proxy measures. The required adaptations suggest a need for stigma measures developed specifically for pediatric cancer.