Self-Stigma and Consumer Participation in Shared Decision Making in Mental Health Services

Objective: People with mental illness struggle with symptoms and with public stigma. Some accept common prejudices and lose self-esteem, resulting in shame and self-stigma, which may affect their interactions with mental health professionals. This study explored whether self-stigma and shame are associated with consumers' preferences for participation in medical decision making and their behavior in psychiatric consultations. Methods: In a cross-sectional study conducted in Germany, 329 individuals with a diagnosis of a schizophrenia spectrum disorder or an affective disorder and their psychiatrists provided sociodemographic and illness-related information. Self-stigma, shame, locus of control, and views about clinical decision making were assessed by self-report. Psychiatrists rated their impression of the decision-making behavior of consumers. Regression analyses and structural equation modeling were used to determine the association of self-stigma and shame with clinical decision making. Results: Self-stigma was not related to consumers' participation preferences, but it was associated with some aspects of communicative behavior. Active and critical behavior (for example, expressing views, daring to challenge the doctor's opinion, and openly speaking out about disagreements with the doctor) was associated with less shame, less self-stigma, more self-responsibility, less attribution of external control to powerful others, and more years of education. Conclusions: Self-stigma and shame were associated with less participative and critical behavior, which probably leads to clinical encounters that involve less shared decision making and more paternalistic decision making. Paternalistic decision making may reinforce self-stigma and lead to poorer health outcomes. Therefore, interventions that reduce self-stigma and increase consumers' critical and participative communication may improve health outcomes.