OBJECTIVE: Discontinuation of antipsychotic medication is a pervasive clinical problem in the treatment of patients suffering from psychosis. The aim of this study was to complement a largely quantitative body of research by focusing on patients' perspectives on the topic. METHODS: In-depth semistructured interviews were conducted with 20 persons who have schizophrenia spectrum disorders. Narratives were elicited on illness and medication use and emphasized key turning points, such as periods of nonadherence and illness relapses. RESULTS: Respondents had extensive experience with antipsychotic treatment (15±12 years of treatment). Nineteen (95%) reported at least one extended period of nonadherence. A complex picture of medication use or refusal emerged from patients' descriptions. An array of external factors influenced initiation of medication and treatment maintenance: pressure from family or clinicians, secondary benefits from initiating and maintaining treatment, and a variety of coercive measures. Moreover, personal factors transcended rational models in deciding whether to take medication; patients' responses stressed the importance of trust, emotional reactions, and subjective experiences with medication and stigma. CONCLUSIONS: These findings call into question the validity of a purely voluntaristic model of the use of antipsychotic medication. Its use was part of a long and painful fight with a debilitating disorder, and off-medication periods were essential parts of a learning process.
OBJECTIVE: Discontinuation of antipsychotic medication is a pervasive clinical problem in the treatment of patients suffering from psychosis. The aim of this study was to complement a largely quantitative body of research by focusing on patients' perspectives on the topic. METHODS: In-depth semistructured interviews were conducted with 20 persons who have schizophrenia spectrum disorders. Narratives were elicited on illness and medication use and emphasized key turning points, such as periods of nonadherence and illness relapses. RESULTS: Respondents had extensive experience with antipsychotic treatment (15±12 years of treatment). Nineteen (95%) reported at least one extended period of nonadherence. A complex picture of medication use or refusal emerged from patients' descriptions. An array of external factors influenced initiation of medication and treatment maintenance: pressure from family or clinicians, secondary benefits from initiating and maintaining treatment, and a variety of coercive measures. Moreover, personal factors transcended rational models in deciding whether to take medication; patients' responses stressed the importance of trust, emotional reactions, and subjective experiences with medication and stigma. CONCLUSIONS: These findings call into question the validity of a purely voluntaristic model of the use of antipsychotic medication. Its use was part of a long and painful fight with a debilitating disorder, and off-medication periods were essential parts of a learning process.