ICD: a qualitative study of patient experience the first year after implantation

Background. The experiences of how patients live with an implantable cardioverter defibrillator are still poorly understood. Only a few qualitative studies have investigated this phenomenon. This paper was undertaken as part of a larger project to evaluate quality of life and psychological well‐being in those survivors of cardiac arrest who have received an implantable cardioverter defibrillator. Aims and objectives. The aim of this qualitative study was to explore how implantable cardioverter defibrillator recipients perceive their lives during the first year after implantation of the device. Methods. A sample of 21 patients who received an implantable cardioverter defibrillator was interviewed during three consecutive periods: one, six and 12 months postdischarge from the hospital. The semi‐structured interviews were based on insights gained from a literature review. The transcripts were subjected to content analysis. Results. Analysis of the data revealed seven major categories: physical deterioration, cognitive changes, perceived social support, dependency, contact with the doctor, confrontation with mortality and uncertainty surrounding having a shock. Anxiety, uncertainty, disappointment, frustration, unexpected barriers, acceptance of and dependency on the implantable cardioverter defibrillator played a major role in the lives of implantable cardioverter defibrillator recipients. Well‐being improved throughout the year. During the first months after discharge from the hospital the focus was on regaining physical health. During the early postimplantation period both the implantable cardioverter defibrillator recipient and family members had adapted to the situation. Reflection on the impact and consequences of the cardiac arrest was reported more often in the late postimplantation period. Conclusions. Content analysis is a resourceful approach giving answers to questions that have hardly been addressed within the domain of cardiology. Implantable cardioverter defibrillator recipients face a complex first year, especially the first 6 months. Cognitive deterioration and confrontation with mortality are problems that need to be researched further. Relevance to clinical practice. Caregivers are able to explain to future patients what they can expect in the first year after implantation. Caregivers may become more receptive to physical, psychological and social limitations and to emotional and social problems that occur in implantable cardioverter defibrillator recipients, enabling them to act upon them.