Exploring internalized stigma among people living with psychosis and their caregivers: Insights from a community rehabilitation initiative in Malawi
Abstract
In low-resource settings, people living with psychosis (PWLE) experience direct mistreatment (experienced stigma), anticipated mistreatment (anticipated stigma), and acceptance of negative beliefs (internalized stigma). Over time, experienced and anticipated stigma can increase internalized stigma, negatively impacting health. However, predictors and outcomes of internalized stigma among PWLE and their caregivers remain poorly understood.
We analyzed data from PWLE and caregivers participating in a two-arm pilot randomized controlled trial comparing a community-based rehabilitation intervention to enhanced usual care in Blantyre, Malawi (NCT06080477). Sixty PWLE and 118 caregivers who met eligibility criteria were enrolled. Predictor and outcome variables were guided by a conceptual model of internalized stigma. Exploratory factor analysis (EFA) assessed the dimensionality of stigma scales. Bivariate correlations examined associations between predictors and outcomes of internalized stigma.
EFA supported single-factor structures with adequate internal consistency for most stigma scales. Among PWLE, mean internalized stigma, anticipated stigma, and experienced stigma decreased from baseline to 12 months in both arms. Stigma measures were generally comparable between arms except for family-enacted stigma, which was lower at 12 months among those receiving the intervention compared to usual care (mean difference -0.97 (-1.86, -0.07)). At baseline, higher family-enacted stigma was moderately associated with higher internalized stigma scores (correlation coefficient = 0.34; 0.13, 0.53). Greater change in family-enacted and anticipated stigma were weakly associated with a greater change in internalized stigma at 6 and 12 months. Greater internalized stigma was associated with higher depression (0.29; 0.05, 0.50), anxiety (0.27; 0.06, 0.46), and disability (0.25; 0.04, 0.44) at baseline but not over time. Caregivers’ internalized stigma decreased over 12 months, with no associated predictors.
These findings highlight that anticipated, experienced, and internalized stigma are prevalent among PWLE in Malawi. Findings suggest the need to continue to explore the mechanisms of internalized stigma to develop strategies to reduce stigma and promote recovery.
