Why do I have to suffer? Symptom management, views and experiences of persons with a CPTSD: a grounded theory approach

BACKGROUND: For the 11th version of the International Classification of Diseases, a new stress related diagnosis has been proposed: complex post-traumatic stress disorder (CPTSD). It is described as a chronic condition with several severe and concurrent symptoms. In the literature, these symptoms are discussed as a common reason for seeking psychiatric treatment as they can influence and impair the quality of life not only for affected persons but also for their social and familial system. AIM: This research studies symptom management in everyday life by exploring and reconstructing the views, perceptions, experiences, facilitators and barriers of adults with CPTSD. METHODS: A theoretical sampling was used to recruit 18 to 65 years old patients diagnosed with CPTSD from an inpatient setting. The 17 semi-structured interviews were audio recorded and transcribed verbatim. The transcriptions were uploaded into MAXQDA, and a Grounded Theory method based on Corbin and Strauss was used to analyse the data. RESULTS: We provide a process model with 5 interacting phases: trauma experience, emotional ignorance, overcompensation, paroxysm, and perspectives. Each phase is specified with subcategories. CONCLUSIONS: The participants did not recognise their symptoms as such and were unaware of their diagnosis for many years. Nevertheless, they used various resources and were able to develop skills and techniques to deal with their symptoms and to function on a day-to-day basis. Overall, the process of symptom management was extremely exhausting for the participants and they felt left alone with it. The participants were eager to gain support from healthcare professionals and, when necessary, financial support from the government. Thus, these results indicate an essential need to develop support and tailored interventions for the symptom management of persons with a CPTSD. TRIAL REGISTRATION: Ethical approval was obtained from the Swiss Cantonal Ethic Commission (Nr 201,500,096). This research was also registered at the World Health Organization Clinical Trials Search Portal through the German Clinical Trial Register, Trial DRKS00012268 .