title: Exploring the patient's experiences of learning to live with an implantable cardioverter defibrillator (ICD) from one UK centre: a qualitative study.
abstract: 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.
  
  
  OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors: Cardiology Department, Level 3, Camden House, Bristol Royal Infirmary, United Bristol Healthcare Trust, Upper Marlborough Street, Bristol BS2 8HW, UK. jenny.tagney@ubht.swest.nhs.uk
authors: Jenny
authors: J
authors: Tagney
authors: Jayne E
authors: JE
authors: James
authors: John W
authors: JW
authors: Albarran
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D017147:Defibrillators, Implantable / Q000009:adverse effects / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D010353:Patient Education as Topic; D036301:Qualitative Research; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires; D006113:United Kingdom