Living With Digital Monitoring in Early Psychosis: Service Users’ Experiences of Privacy, Stigma and Therapeutic Trust

Abstract

Digital monitoring is increasingly incorporated into psychosis care through smartphone symptom monitoring, passive sensing, digitally mediated therapy, supported self-management, and algorithm-based relapse prediction. Its clinical and ethical value, however, depends not only on technical performance but also on how service users experience data collection, interpretation, stigma, autonomy, and therapeutic relationships. This qualitative evidence synthesis examined service-user experiences of privacy, stigma, and therapeutic trust in early psychosis and broader psychosis-spectrum care. PubMed/MEDLINE, PsycINFO, Scopus, and Web of Science were searched for literature published from January 2016 through April 2026, supplemented by citation chaining. Contextual literature was separated from the primary empirical evidence used for thematic synthesis. Sixteen primary studies published between 2021 and 2026 contributed to the findings and encompassed active symptom monitoring, passive smartphone sensing, digitally mediated therapy, supported self-management, digital access and engagement, and algorithm-based relapse prediction. Reflexive thematic synthesis identified three interconnected themes. First, consent functioned as an ongoing negotiation of data type, purpose, access, interpretation, and continued participation rather than as a single authorization event. Second, digital care could reduce visible contact with mental health services while simultaneously reproducing stigma through digital exclusion, disclosure of psychiatric identity, persistent records, and decontextualized interpretation of ordinary behaviour as risk. Third, therapeutic trust depended on reciprocity, human interpretation, transparency about responsibility, contestability of automated outputs, and evidence that monitoring produced meaningful and timely benefit. Experiences differed according to monitoring modality and whether participants described actual or anticipated technology use. Digital monitoring in psychosis care is therefore most defensible when data collection is proportionate, users retain meaningful control, automated interpretations remain contestable, and monitoring supports rather than substitutes therapeutic relationships. The heterogeneity of digital modalities, study designs, psychosis stages, and predominantly high-income settings limits the transferability of the synthesis and warrants longitudinal research examining lived experience during routine clinical implementation