Barriers in the help-seeking process: a multiple-case study of early-onset dysthymia in Sweden

The aim of this study was to investigate barriers to diagnosis and adequate treatment of patients with early-onset dysthymia by studying how understandings of illness by patients and providers have evolved and how treatments have been negotiated over time. A theory-testing and explorative multiple-case study design was used with developmental cognitive theory as framework. Data pertaining 10 non-remission dysthymic patients were analyzed using five sources: 1) case records, 2) interviews, 3) self-report questionnaires, 4) observations, and 5) life-charting, eliciting life events, course and treatments. The analysis comprised qualitative content analysis and a coding scheme of knowledge structures. Barriers could be explained by misunderstandings as patients mainly expressed illness in concrete, perceptually bound knowledge structures and providers focused on one aspect, instead of on the complexity of concurrent aspects. Another barrier, associated to comorbid personality disorder, was a core pattern of concealing due to fear of rejection and mistrust. Other barriers were connected to providers' attitudes and contextual factors such as access problems and lack of follow-up. A theoretical model that involves patients' understanding of illness in preoperational thinking and providers' cognitive errors can explain communication barriers. Means of shared understanding and treatment planning are suggested. Future treatment research could elucidate the impact of the core belief of rejection with associated strategy of concealing by assessing these variables as predictors and as targets for change.