How the experience of living with an Implantable Cardioverter Defibrillator influences the educational needs and concerns of patients and their partners.

Abstract

Background: The aim of this study was to develop an understanding of how the experience of living with an Implantable Cardioverter Defibrillator (ICD) influenced patients and their partners' educational needs and concerns. An ICD is a device that is designed to treat patients who have life-threatening arrhythmias. The quality of life (QoL) of the ICD recipient is not only influenced by the disease itself but by adjustment to an altered life situation. Providing patient education can be an effective intervention to improve patient adjustment to the device. However, there is little qualitative research on the educational needs and concerns of these patients. It is therefore argued that qualitative research focussing on the lived experiences of patients is needed to identify appropriate educational interventions to facilitate this adjustment. Methodology: The constant comparative method of constructivist grounded theory was employed for data collection and analysis. Semi-structured face-toface interviews were carried out with fourteen ICD patients and four partners. Findings: A grounded theory model was developed which described how patient's experiences of getting back to normal following the insertion of an ICD influenced their educational needs and concerns and ultimately led to their acceptance of the ICD. The model had two key components, getting back to normal and being informed. How the patients and carers experienced getting back to normal consisted of adapting lifestyle, focusing on the positive, effect on the family and living with the uncertainty regarding experiencing an ICD shock. Their experience of the ICD influenced their educational needs in that the information needed to be tailored to their individual experiences. Discussion: This study found a strong need to feel informed, which is a major part of Mishels theory of uncertainty. The model is also compared to the crisis theory and the common-sense model of illness representations. The chapter ends with a conclusion and recommendations for future resea