Follow-up of adults with con- genitally malformed hearts with focus on individualised and computer-based education and psychosocial support - A descriptive and interventional study

.................................................................................................................. 1 LIST OF PAPERS ........................................................................................................ 3 ABBREVIATIONS ...................................................................................................... 4 INTRODUCTION ....................................................................................................... 5 BACKGROUND .......................................................................................................... 7 ADULTS WITH CONGENITALLY MALFORMED HEARTS ................... 7 Definition ......................................................................................................... 7 Etiology ............................................................................................................. 7 Epidemiology .................................................................................................. 8 Sociodemographic characteristics ................................................................ 9 Correction of the heart defect ........................................................................ 9 Symptoms and needs of risk reduction ..................................................... 10 Individual knowledge about the heart condition .................................... 11 Follow-up in the health care system .......................................................... 12 Self-management .......................................................................................... 13 Knowledge, learning and education .......................................................... 14 AIMS OF THE THESIS ............................................................................................ 16 SUBJECTS AND METHODS ................................................................................. 17 Design ................................................................................................................... 17 Setting, participants and procedures ............................................................. 18 Study I ............................................................................................................. 18 Study II, III, and IV ....................................................................................... 18 Qualitative methods .......................................................................................... 24 Phenomenography ........................................................................................ 24 Quantitative methods ........................................................................................ 26 Development and psychometric evaluation of the knowledge scale ... 26