Exploring internalized stigma among people living with psychosis and their caregivers: Insights from a community rehabilitation initiative in Malawi

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Abstract
People living with psychosis (PWLE) experience, anticipate, and internalize 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 unknown. We explore how stigma changes over time; the associations between hypothesized predictors and internalized stigma; and how internalized stigma influences mental health and functional outcomes. We analyzed data from 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 completed interviewer-administered surveys at baseline, 6, and 12 months. Exploratory factor analysis (EFA) assessed the dimensionality of stigma scales. We used correlations and adjusted generalized estimating equations to examine 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; -1.88, -0.05). 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 stigma (regression coefficient = 0.24; 0.04, 0.43) and anticipated stigma (0.14; 0.02, 0.26) were weakly associated with greater change in internalized stigma. At baseline, internalized stigma was weakly associated with depressive (0.14; -0.08, 0.35) and anxiety symptoms (0.11; -0.08, 0.31). Over time, greater increases in internalized stigma were associated with higher anxiety (0.13; 0.01, 0.24). Caregivers’ internalized stigma decreased over 12 months, with no associated predictors. Anticipated, experienced, and internalized stigma are prevalent among PWLE in Malawi. Findings suggest the need to continue to explore the mechanisms between predictors and outcomes of internalized stigma.
Funding Information
  • National Institute of Mental Health (5R34MH131234-03)
  • National Institute of Mental Health (5R34MH131234-03)

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