Longitudinal observational studies play on an important role for evidence-based research on health services and psychiatric rehabilitation. However, information is missing about the reasons, why patients participate in such studies, and how they evaluate their participation experience.
Subsequently to their final assessment in a 2-year follow-up study on supported housing for persons with severe mental illness,
To help other people and curiosity were cited as the main initial reasons for study participation (>85%). Further motives were significantly associated with demographic and/or clinical variables. For instance, “relieve from boredom” was more frequently reported by men and patients with substance use disorders (compared to mood disorders), and participants ‘motive” to talk about illness” was associated with higher symptom severity at study entry. Furthermore, only a small proportion of respondents indicated significant burdens by study participation and about 87% would also participate in future studies.
The respondents gave an overall positive evaluation regarding their participation experience in an observational study on psychiatric rehabilitation. The results additionally suggest that health and social care professionals should be responsive to the expectations and needs of patients with mental illness regarding participation in research.