BACKGROUND: International expansion of indications for implantable cardioverter defibrillator (ICD) implant means increasing numbers of patients with devices worldwide. However, smaller numbers of patients with ICDs in the UK has meant that clinical expertise available to care for this specialized group is limited. Whilst North American patients’ experiences of living with an ICD are well documented, European perspectives remain underrepresented. AIM: The aim of this study was to explore and describe patient's experiences around the time of their ICD device implant and after they returned home from one UK centre. METHODS AND RESULTS: Eligible patients were recruited from one regional cardiothoracic centre and interviewed in their own homes using semi-structured schedules. Analysis of data elicited three themes; non-individualised nature of information, adjustments to living with the device and future outlook. Unique findings identified were; (a) concealment of concerns and symptoms; (b) funding issues; and (c) unavailability of appropriate support and advice during and after time in hospital. CONCLUSION: Individualized care and support for these ICD patients appeared lacking according to respondents. Opportunities to discuss concerns appeared non-existent, which may indicate that UK patients are disadvantaged in the domain of psychological support compared with their European and North American counterparts. Findings remain tentative until explored with a larger, more representative and international sample.
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