COPE-ICD: Patient experience of participation in an ICD specific rehabilitation programme

PURPOSE: Evaluating rehabilitation programmes from the patient's perspective is much needed, as the patients are the most important stakeholders in the health care system. A comprehensive rehabilitation programme, COPE-ICD programme, consists of exercise training and nursing consultations during a one year period post ICD implantation. The purpose of this paper is to describe the experience and meaning of participating in a comprehensive ICD-specific rehabilitation programme. METHODS: Qualitative interviews were conducted with 10 patients representing the participating population, and later transcribed. The analysis was inspired by Ricoeur's theory of interpretation, which consists of three levels: naive reading, structured analysis and critical interpretation and discussion. RESULTS: The overall concept was that participating in the COPE-ICD programme meant feeling inspired and secure through individualized care. Four themes emerged: Knowledge: patients gained much needed understanding; Physical attention: patients interpreted body signals and adjusted their exercise behaviour; Trust: patients regained trust, felt secure and dared to live again; Strategies of living: patients' coping was supported through reflection and professional dialogue, and they dealt with the risk of shock or death. CONCLUSION: Participating in an ICD-specific rehabilitation programme can make patients feel inspired and secure through individualized care. They discover that they have to rethink some of their strategies of living and they gain support in the reflection and coping needed for that. Patients gain insight and they develop a special physical attention whereby they continue healthy activities through interpreting body signals and adjusting exercise behaviour. They learn to trust their body again.