Experiences of diabetes stigma among adults with type 1 and type 2 diabetes: A multi‐study, multi‐country, secondary analysis

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.