Implantable cardioverter defibrillators (ICDs) can reduce unexpected cardiac mortality, but they also have a dramatic impact on a patient's quality of life. We aimed to explore ICD recipients' experiences in order to foster improvements in the quality of care. Analyses were done using a descriptive phenomenological method, based on qualitative interview data from a purposive sample of 20 ICD recipients. Four main themes emerged: living with fear; relying on technology; knowing about the ICD and how to live with it; and coping with the effects of the ICD on daily life. ICD recipients lived in a constant state of fear due to the presence of the device and the uncertainty related to the potential electrical shocks it could deliver. This fear was compounded by changes that severely affected the quality of their daily life. ICD recipients felt they were always on the brink of death, and that although they received sufficient technical information they did not feel they received meaningful information to help them accept, live with, and cope with the device. Emotional information and support, rather than technical information, must be provided to ICD recipients to give them the ability to cope with the everyday threats they perceive because of the device. Qualitative evidence may help professionals tackle known threats to patients' quality of life and increase the quality of care.
Keywords: implantable cardioverter defibrillator; patients' lived experience; phenomenological approach; qualitative methodology.
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