Caring and uncaring experiences as narrated by persons with long-term pain after a stroke.

The aim of this study was to describe how persons with long-term pain after a stroke experience their care. The study is part of a larger research project concerning a group persons suffering from long-term pain after a stroke. Qualitative interviews were performed with 43 persons suffering from central poststroke pain, nociceptive pain or tension-type headache after their stroke incident. Content congruence emerged among the narratives (n = 43), and therefore the most information-rich ones (n = 23) were selected for deeper investigation by means of qualitative content analysis. The results reveal the patients' need for being respected, understood and supported, also for being given adequate time and information. Accessibility and continuity in the professional contacts and with regard to medical and physical treatment was emphasized. The participants' narratives highlight the importance of the professionals having knowledge of pain and pain management.