Living at the boundary between life and death: A qualitative study of how patients' lives are impacted by the implantable cardioverter defibrillator.

Aims: To examine the effect on patients' lives of implantable cardioverter defibrillator implantation and their experiences of worry about death.

Design: A descriptive phenomenological design.

Methods: Participants with implantable cardioverter defibrillators were recruited through purposive sampling with maximum variation in Antalya, Turkey. Data collection included individual semi-structured interviews conducted between September 2018 - May 2019. Interviews were audio recorded, transcribed verbatim, and analysed by Giorgi's descriptive phenomenology method.

Results: Twenty-six individuals with implantable cardioverter defibrillators participated in the study. Analysis of the data resulted in three themes and 10 subthemes. The first theme was the physical impact of the device on the body with the subthemes changes in physical functioning and like part of the body; the second theme was social impact in daily life and adaptation to restrictions with the subthemes necessary for life, restrictive behaviours of day-to-day life and Seeking social support and the third theme was the emotional impact of the experience of shock and worry about death with the subthemes inevitable truth, living at the boundary, every shock is like you are going to die, advancing on an uncertain path, and trust in life insurance.

Conclusion: It was found in this study that the implantation of implantable cardioverter defibrillators affected patients physically, socially, and emotionally in many ways. It is thought that this study will raise the awareness of health professionals and will support a holistic approach, increasing the quality of care.

Impact: Although the implantation of the cardioverter defibrillator is greatly effective in protecting against sudden cardiac death, for patients it brings with it many physical, social, and emotional problems. This study can contribute to health professionals planning individual education in coping with changes, an increase in group-based counselling to support the sharing of experience, social networks, and monitoring programs to improve care.