Experiences of diabetes stigma among adults with type 1 and type 2 diabetes: A multi‐study, multi‐country, secondary analysis
Elizabeth Holmes‐Truscott, Eloise Litterbach, Uffe Søholm, Paul A. Agius, Hamzah Alzubaidi, Valery Bodziony, Joncarl Bresolin, Kim Fletcher, Matthew Garza, Kevin L. Joiner, Rebecca M. Puhl, Michio Shimabukuro, Laura Syron, Hiroko Takaike, Michael Vallis, Heather Verry, Jennifer A. Halliday, Sarah Manallack, Timothy Skinner, Jane Speight
Abstract
AIMS: To conduct a multi-study, cross-country examination of diabetes stigma among adults with type 1 and type 2 diabetes (T1D, T2D). METHODS: Pre-existing, cross-sectional studies of adults (aged ≥18) completing the T1D or T2D Diabetes Stigma Assessment Scales (DSAS-1/DSAS-2) were collated. Descriptive statistics were calculated for (sub)scale and item scores. Variance-components linear random-effect multi-level modelling (nested random intercepts for country and study) estimated overall mean (sub)scale scores, 95% confidence intervals, intraclass correlation coefficients (ICC) and 95% prediction intervals. Likelihood ratio (LR) tests provided inference for country- and study-specific heterogeneity. RESULTS: Eleven studies were included from six countries (Australia k = 2, Canada k = 1, Japan k = 2, New Zealand k = 1, UAE k = 1, USA k = 4) in four languages (Arabic k = 1, English k = 7, Japanese k = 2, Spanish k = 1). Six studies included n = 3114 adults with T1D (insulin pump: 42%; 75% aged <60 years). Ten studies included n = 6586 adults with T2D (insulin-treated: 37%; 44% aged <60 years). Most reported ≥1 experience of diabetes stigma (T1D = 91%; study range: 84%-96%; T2D = 77%; 69%-89%). In 10 studies, the 'blame and judgment' subscale was most endorsed (T1D = 83%; 62%-89%, T2D = 70%; 53%-79%). Most adults with T1D reported 'identity concerns' (73%; 62%-80%), and 47% of adults with T2D reported 'self-stigma' (30-60%). Being 'treated differently' was least common (T1D = 46%; 40%-54%, T2D = 37%; 28%-47%). Low levels of heterogeneity were observed in mean [SE] total scores (DSAS-1: 54 [0.94] ICC = 0.02, p < 0.001; DSAS-2: 44 [1.1], ICC ≤0.4, p < 0.001). CONCLUSIONS: Findings suggest a high and relatively consistent prevalence of diabetes stigma across studies and within and across countries, supporting calls for local and global action.