Living with an implantable cardioverter defibrillator : Swedish and US patients' experiences of their life situation

Sammanfattning: The general aim of this study was to describe changes in uncertainty and satisfaction as well as to explore how patients with an ICD experience their life situation over a two year period. The design was explorative and descriptive, combining both quantitative and qualitative approaches. Data were collected from two locations, Sweden and the US. The data collection methods employed were questionnaires, the Uncertainty in Illness Scale- Community version (MUIS-C) and the Quality of Life Index, (Cardiac III, Parts I, II). Interviews were based on a phenomenographic approach. Statistical analysis was chosen to describe the patients' life situation.During the initial phase the patients went through a process of adaption and learning to trust the ICD as well as becoming aware of the restrictions in their everyday lives. This was followed by a reorientation phase during which they adapted to and accepted their new life situation, after which both the patient and his/her family regained trust. The present findings can facilitate life style modifications and ensure that the goal of care is to take account of the patients' and healthcare professionals' understanding of living with an ICD.