Reconstructing unpredictability: experiences of living with an implantable cardioverter defibrillator over time

Background. The experience of living with an implantable cardioverter defibrillator over time is still poorly understood. Few qualitative studies have investigated this phenomenon. Aims. To explore implantable cardioverter defibrillator recipients’ experiences of living with an implantable cardioverter defibrillator over time. Design. Qualitative. Methods. Semi‐structured interviews were performed with 16 persons living with an implantable cardioverter defibrillator. The constant comparative method of grounded theory was used for data collection and analysis. Results. The core category was defined as ‘Reconstructing the unpredictability of living with an ICD’ and illustrated by four categories: ‘losing control’; ‘regaining control’; ‘lacking support’; and ‘seeking support’. The category ‘losing control’ encompassed experiences of unpredictability leading to uncertainty as a result of the triggering of the device. Reduced activity to avoid shocks played a major role. In the category ‘regaining control’, wellbeing increased as time elapsed after the shock and the implantable cardioverter defibrillator recipients reconstructed the unpredictability by adapting to life changes, trusting the implantable cardioverter defibrillator as a life saver and accepting uncertainty. The category labelled ‘lacking support’ highlighted the implantable cardioverter defibrillator recipients’ experiences of lack of appropriate support and advice from health care professionals. The final category ‘seeking support’ illustrates the implantable cardioverter defibrillator recipients’ attempts to obtain guidance and support from family members and health care professionals and the importance of these aspects for the recovery process. Conclusion. Living with an implantable cardioverter defibrillator over time was characterised by unpredictability and uncertainty associated with the triggering of the device. Despite coping with uncertainty by means of several strategies, a new onset of arrhythmia could reinforce the feeling of losing control. An important finding was the reduced activity level. Relevance for clinical practice. The results provide knowledge that can aid the design of an intervention programme aimed at reducing patient insecurity and enhancing physical activity. Nurses are in a key position to implement such strategies.