Abstract
BackgroundLongitudinal 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.MethodsSubsequently to their final assessment in a 2-year follow-up study on supported housing for persons with severe mental illness, n = 182 patients answered a short questionnaire on their study participation experience (prior experiences, participation reasons, burden due to study assessments, intention to participate in studies again). Basic respondent characteristics as well as symptom severity (SCL-K9) were also included in the descriptive and analytical statistics.ResultsTo 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.ConclusionsThe 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.
Highlights
To improve and develop psychosocial health care and rehabilitation, empirical research is needed
The present study aims to address (a) what reasons motivate patients to participate in a longitudinal observational study on psychiatric rehabilitation? (b) What are the burdens for the study participants? (c) In how far are reasons and burdens associated with possible moderators such as socio-demographics, prior research experience, symptom severity or diagnostic group?
This proportion of 90% roughly corresponds to the 86% from a study on managed care in severe mental illness [10], but it was even somewhat higher than the 75% from a RCT on antidepressant medication [28]. In our study this proportion did not differ between persons with and without previous research experience, so it can be concluded that even patients participating in research for the first time ever gained a good impression from their experiences in a longitudinal observational study
Summary
To improve and develop psychosocial health care and rehabilitation, empirical research is needed. Patients’ willingness to participate in research is influenced by different variables from three major domains [6]: Sociocultural and demographic factors (e.g., age, gender); individual experiences and attitudes (e.g., prior research experience, general attitudes toward research), and clinical factors (e.g., diagnosis, severity of illness). Within this framework, participation is influenced by specific characteristics of the study [6]. “invasive” methods like medication trials achieved the lowest acceptance rate (58%), while the highest willingness to participate was found for studies with questionnaires (91%) Aside such general attitudes toward research, studies have, focused on the extent to which individuals with mental disorders are affected when participating in research projects. Information is missing about the reasons, why patients participate in such studies, and how they evaluate their participation experience
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