# Perceived Experience of the clozapine Treatment Protocol: A Qualitative Study of Reports by Brazilian Patients With Schizophrenia Treated in a University Outpatient Service Specializing in Psychiatry

## TL;DR

This study explores how Brazilian patients with schizophrenia perceive the clozapine treatment protocol, focusing on their emotional and symbolic experiences.

## Contribution

The study provides new insights into how patients interpret the clozapine treatment protocol, emphasizing its impact on adherence and emotional well-being.

## Key findings

- Routine blood tests have limited symbolic impact on patients' treatment adherence.
- The protocol is viewed as life-affirming and supports adherence through a sense of security.
- The protocol reinforces the embodiment of a psychiatric diagnosis for patients.

## Abstract

Understanding the meanings people attribute to observed events and lived experiences is to unveil their symbolic universe, thus allowing us to help them better manage their emotions, reactions, and relationships, particularly in clinical settings. Patients with schizophrenia resistant to treatment with first‐ and second‐generation antipsychotics respond well to clozapine; however, this medication presents agranulocytosis as an important side effect. Consequently, the medication protocol requires frequent blood draws to monitor any effects on blood cells. Investigating patients’ perceived emotional experiences of this procedure triggered our study.

To interpret emotional and/or symbolic meanings attributed by patients with schizophrenia to the clozapine treatment protocol during follow‐up at a university outpatient service specializing in psychiatry.

A clinical‐qualitative study was conducted based on Turato's design. Data were collected by means of in‐depth semi‐directed interviews with open‐ended questions conducted in‐person with participants using clozapine. Sampling followed Fontanella's theoretical information saturation criterion. Data were explored by Faria‐Schutzer's clinical‐qualitative content analysis (CQCA), employing psychodynamic concepts from Medical Psychology.

Analysis of nine interviews resulted in four categories: (1) the frequent blood collections foreseen by the protocol seem to have little impact on patient's symbolization and treatment adherence; (2) “I come here to stay alive”: the frequent blood collections foreseen by the protocol seem to have a good impact on patient's treatment adherence; (3) Reframing a psychiatric illness: the protocol reinforces the embodiment of a medical diagnosis.

Faced with a socially and psychologically non‐silent mental disorder, management of schizophrenic symptoms seems to suppress patient symbolization of the blood count collection protocol and the risk of agranulocytosis. Moreover, the protocol appears to promote safety and favor treatment adherence, as well as to provide a greater level of social integration by inserting patients into the health system dynamics.

Despite the repetitive experience of blood collection for rigorous effect control, such a ritual does not seem to bring about symbolizations “more charged” than the chronicity of the disease itself. Therefore, patients benefit from the frequent blood collections, as it secures them from possible social isolation by promoting social interaction. These benefits can help patients to develop new meanings for their life condition.

This qualitative study explores the symbolic meanings attributed by patients with treatment‐resistant schizophrenia (TRS) to the strict clozapine protocol. Drawing on underutilization data, the research investigates how fantasies, fears, and emotional responses may contribute to non‐adherence. Through in‐depth, semi‐structured interviews and clinical‐qualitative content analysis, three categories emerged: (1) routine blood tests have limited symbolic impact; (2) they are also viewed as life‐affirming, supporting adherence; and (3) the protocol reinforces the embodiment of a psychiatric diagnosis. Findings suggest the clozapine protocol symbolic relevance, though for many, this remains only partially internalised.