Follow-up of adults with con - Malmö Kongressbyrå AB PDF
Preview Follow-up of adults with con - Malmö Kongressbyrå AB
Linköping University Medical Dissertations No. 1239 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 Helén Rönning Division of Nursing Science Department of Medical and Health Sciences Linköping University, Sweden Linköping 2011 !Helén Rönning, 2011 Cover picture/illustration: Helén Rönning Published articles have been reprinted with permission of the copyright hold- ers. Printed in Sweden by LiU-Tryck, Linköping, Sweden, 2011 ISBN 978-91-7393-189-2 ISSN 0345-0082 To you Take charge of your life – design your curriculum If you do not design your life – you will never know where the road goes Tell me and I will forget show me and I will remember, share with me and I will understand Chinese saying Contents CONTENTS ABSTRACT .................................................................................................................. 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 Contents Computer-based educational program ..................................................... 28 Instruments ......................................................................................................... 32 Perceived control........................................................................................... 32 Anxiety and depression ............................................................................... 32 Statistical analyses ............................................................................................. 32 Ethical aspects ..................................................................................................... 33 RESULTS .................................................................................................................... 35 Educational needs - individualised ................................................................ 36 Tools for evaluation - KnoCoMH ................................................................... 40 Tools for education - a model for follow-up ................................................ 42 Visit to the physician .................................................................................... 43 Visit to the specialised nurse ....................................................................... 43 Effects of individualised and computer-based education and psychosocial support ......................................................................................... 46 DISCUSSION ............................................................................................................ 49 Discussion of Results ........................................................................................ 49 Educational needs and a model for follow-up ......................................... 49 A tool for evaluating knowledge; KnoCoMH .......................................... 51 A tool for education – individualised and computer-based education 52 Evaluation of a model for follow-up .......................................................... 53 Methodological considerations ....................................................................... 54 The qualitative study .................................................................................... 54 The quantitative studies ............................................................................... 55 Clinical implications ......................................................................................... 56 Research implications ....................................................................................... 59 CONCLUSIONS ....................................................................................................... 60 SAMMANFATTNING PÅ SVENSKA (SUMMARY IN SWEDISH) ............ 61 ACKNOWLEDGEMENTS ...................................................................................... 65 REFERENCES ............................................................................................................ 69 Contents APPENDIX ................................................................................................................. 83 Appendix A: Discrimination ability and internal consistency ................. 84 Domain: General knowledge .................................................................... 84 Domain: Medical treatment ......................................................................... 86 Domain: endocarditis prophylaxis ............................................................. 87 Domain: Contraceptives and pregnancy ................................................... 89 Appendix B: KnoCoMH – Swedish version ................................................. 91 Manual; Dikotomisering och summering av KnoCoMH ....................... 92 Kunskapsenkät: KnoCoMH - För vuxna med medfött hjärtfel ............. 95 Appendix C: KnoCoMH – English version ................................................. 101 Manual; Dichotomising and scoring KnoCoMH ................................... 102 The Instrument: KnoCoMH - For Adults with congenitally malformed hearts ............................................................................................................. 105
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