ABSTRACT
In the context of psychiatric care, user-generated measurement instruments may contribute to quality development and assurance. An explorative construct of experience-related quality components was developed in participative-collaborative cooperation that grasps the users' experiences of psychiatric care. After developing the components using a grounded theory methodology, they were quantified, and their interrelations were investigated using a multidimensional scaling method to explore their internal cohesion. The construct makes it possible to separate structural from interpersonal requirements of the quality components. It further indicated which components are more feasible for the home treatment setting, and which ones for an institutional setting. The components and the construct may be perceived as first steps towards the development of user-generated quality indicators; however, further validation steps are necessary.
Subject(s)
Mental Health Services , Quality Assurance, Health Care , Humans , Germany , Mental Health Services/standards , PsychiatryABSTRACT
BACKGROUND: Research tools to evaluate institutions or interventions in the field of mental health have rarely been constructed by researchers with personal experience of using the mental health system ("experiential expertise"). This paper presents a preliminary tool that has been developed within a participatory-collaborative process evaluation as part of a controlled, multi-center, prospective cohort study (PsychCare) to evaluate psychiatric flexible and integrative treatment, FIT for short, models in Germany. METHOD: The collaborative research team consisting of researchers with and without experiential expertise developed 12 experiential program components of FIT models by an iterative research process based on the Grounded Theory Methodology. These components were transformed into a preliminary research tool that was evaluated by a participatory expert panel, and during a pilot and validation study, the latter using a random sample of 327 users from 14 mental health departments. Internal consistency of the tool was tested using Cronbach's alpha. Construct validity was evaluated using a Principal Components Analysis (PCA) and a Jonckheere Terpstra test in relation to different implementation levels of the FIT model. Concurrent validity was tested against a German version of the Client Satisfaction Questionnaire (ZUF-8) using correlation analysis and a linear regression model. RESULTS: The evaluation of the expert panel reduced 29 initial items to 16 that were further reduced to 11 items during the pilot study, resulting into a research tool (Needs and Experiences in Psychiatric Treatment-NEPT) that demonstrated good internal consistency (Cronbach's alpha of 0.89). PCA yielded a 1-component structure, which accounted for 49% of the total variance supporting the unidimensional structure of the tool. The total NEPT score increased alongside the increasing implementation of the FIT model (p < 0.05). There was evidence (p < 0.001) for convergent validity assessed against the ZUF-8 as criterion measure. CONCLUSIONS: The NEPT tool seems to be promising for further development to assess the experiences with and fulfillment of needs of psychiatric care models from the perspective of users. This paper demonstrates that it is possible to use a participatory-collaborative approach within the methodologically rigorous confines of a prospective, controlled research design.
ABSTRACT
Background: In the field of mental health research, collaborative and participatory approaches in which mental health service users actively contribute to academic knowledge production are gaining momentum. However, concrete examples in scientific literature that would detail how collaborative research projects are actually organized, and how they deal with the inherent challenges are rare. This paper provides an in-depth description of a three-year collaborative project that took place in the wider context of a mixed-method process evaluation of innovative models of psychiatric care in Germany. Methods: The in-depth description we provide here draws on a vast body of notes and records that originated from numerous meetings and sessions. The research group continuously and systematically reflected on their collaboration itself using the interpretative method of "interactive interviewing," which included that also the personal memories of the researchers were collectively re-discussed before and during the process of writing. Our concrete experiences as a group were then contextualized with and analyzed in the light of more general challenges that are central to collaborative research in general. Results: Performing collaborative research requires unconventional thinking and improvisation in order to find creative solutions for practical problems and to overcome the structural obstacles inherent to the process of academic knowledge production. An atmosphere of mutual trust and respect within the group is crucial, and continuous self-reflection or supervision can be largely beneficial. Challenges mainly originate from the vast heterogeneity that characterizes the researchers, usually including large differences in economic, cultural, and social capital. Conclusion: Collaborative research in the field of psychiatry is designed to bring together researchers with widely diverse backgrounds. Emerging conflicts are important parts of knowledge production but also exceptional opportunities to negotiate research ethics, and potential vehicles for personal growth and transformation. Success or failure of collaborative research largely depends on how divergences and conflicts are articulated, mediated, and reflected. This also holds true in the light of the power asymmetries within the research team and the structural power inherent to the engines of academic knowledge production.
