Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-22T23:59:24.641Z Has data issue: false hasContentIssue false
  • English
  • Français

Educational needs in adults with congenitally malformed hearts

Published online by Cambridge University Press:  18 July 2008

Helén Rönning ,
Niels Erik Nielsen ,
Eva Swahn  and
Anna Strömberg
Helén Rönning*
Affiliation:
Department of Medical and Health Sciences, Division of Nursing Science, Linköping University, Sweden
Niels Erik Nielsen
Affiliation:
Department of Cardiology, Linköping University Hospital, Linköping, Sweden
Eva Swahn
Affiliation:
Department of Medical and Health Sciences, Division of Cardiovascular Medicine, Linköping University, Sweden
Anna Strömberg
Affiliation:
Department of Medical and Health Sciences, Division of Nursing Science, Linköping University, Sweden
*
Correspondence to: Helén Rönning RN, Department of Cardiology, Linköping University Hospital, S-581 85 Linköping, Sweden. Tel: +46 1322 87 79; Fax: +46 13 22 22 24; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Background and aim

The number of adults with congenitally malformed hearts is growing, and there is an increasing demand for their continuous follow-up. At present, different programmes have been established for adults with congenital cardiac disease, but there is a lack of knowledge regarding how education and psychosocial support should be given to achieve effects. Before developing educational programmes, it is necessary to be aware of the perspective of the patients. The aim of our study, therefore, was to describe how adults with congenitally malformed hearts experience their educational needs.

Methods

The study had a qualitative design. We interviewed 16 adults, aged from 19 to 55 years, with congenitally malformed hearts.

Results

Two-way communication emerged as crucial to individualising education. Without good communication, those with congenitally malformed hearts, receiving information from providers of healthcare, are unable to transfer the information received. Thus, individualised education gives access to knowledge and the tools required to manage important areas in life, such as the congenital cardiac malformation, physical activity, the situation of life, treatment, and resources available for healthcare. The information given should provide easy access to knowledge through proper educational materials and methods, and be given with respect for the individual. This is facilitated if the education is tailored to the requirements of the individual in a holistic approach, and is provided through good communication.

Conclusion

Our investigation shows that a structured educational programme needs to start from the perspective of the individual patient, and that two-way communication needs to be taken into consideration to enhance knowledge.

Keywords

Patient' experiencespatient informationphenomenographicsqualitative studypatient educationcongenital heart disease
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue 5 , October 2008 , pp. 473 - 479
Copyright
Copyright © Cambridge University Press 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Wren, C, O’sullivan, JJ. Survival with congenital heart disease and need for follow up in adult life. Heart 2001; 85: 438–443.CrossRefGoogle ScholarPubMed
2. Meberg, A, Otterstad, JE, Froland, G, Lindberg, H, Sorland, SJ. Outcome of congenital heart defects--a population-based study. Acta Paediatr 2000; 89: 1344–1351.Google ScholarPubMed
3. Deanfield, J, Thaulow, E, Warnes, C, et al. Management of grown up congenital heart disease. Eur Heart J 2003; 24: 1035–1084.CrossRefGoogle ScholarPubMed
4. Therrien, J, Dore, A, Gersony, W, et al. CCS Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I. Can J Cardiol 2001; 17: 940–959.Google ScholarPubMed
5. Therrien, J, Gatzoulis, M, Graham, T, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: Recommendations for the Management of Adults with Congenital Heart Disease--Part II. Can J Cardiol 2001; 17: 1029–1050.Google Scholar
6. Therrien, J, Warnes, C, Daliento, L, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease Part III. Can J Cardiol 2001; 17: 1135–1158.Google Scholar
7. Williams, RG, Pearson, GD, Barst, RJ, et al. Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol 2006; 47: 701–707.CrossRefGoogle Scholar
8. Moons, P, Scholte, OP, Reimer, W, De Geest, S, et al. Nurse specialists in adult congenital heart disease: the current status in Europe. Eur J Cardiovasc Nurs 2006; 5: 60–67.CrossRefGoogle ScholarPubMed
9. Reid, GJ, Irvine, MJ, Mccrindle, BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004; 113: 197–205.CrossRefGoogle ScholarPubMed
10. Mackie, AS, Pilote, L, Ionescu-Ittu, R, Rahme, E, Marelli, AJ. Health care resource utilization in adults with congenital heart disease. Am J Cardiol 2007; 99: 839–843.CrossRefGoogle ScholarPubMed
11. Chessa, M, Arciprete, P, Bossone, E, et al. A multicentre approach for the management of adults with congenital heart disease. J Cardiovasc Med 2006; 7: 701–705.CrossRefGoogle ScholarPubMed
12. Moons, P, Engelfriet, P, Kaemmerer, H, et al. Delivery of care for adult patients with congenital heart disease in Europe: results from the Euro Heart Survey. Eur Heart J 2006; 27: 1324–1330.CrossRefGoogle ScholarPubMed
13. Kafka, H, Johnson, MR, Gatzoulis, MA. The team approach to pregnancy and congenital heart disease. Cardiol Clin 2006; 24: 587.CrossRefGoogle Scholar
14. Knauth, A, Verstappen, A, Reiss, J, Webb, GD. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 2006; 24: 619.CrossRefGoogle Scholar
15. Kovacs, AH, Sears, SF, Saidi, AS. Biopsychosocial experiences of adults with congenital heart disease: review of the literature. Am Heart J 2005; 150: 193–201.CrossRefGoogle ScholarPubMed
16. Berg, SK, Hertz, PG. Outpatient nursing clinic for congenital heart disease patients. J Cardiovasc Nurs 2007; 22: 488.CrossRefGoogle ScholarPubMed
17. Moons, P, De Volder, E, Budts, W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001; 86: 74–80.Google Scholar
18. Kantoch, MJ, Collins-Nakai, RL, Medwid, S, Ungstad, E, Taylor, DA. Adult patients’ knowledge about their congenital heart disease. Can J Cardiol 1997; 13: 641–645.Google ScholarPubMed
19. Dore, A, De Guise, P, Mercier, LA. Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can J Cardiol 2002; 18: 141–146.Google ScholarPubMed
20. Kamphuis, M, Verloove-Vanhorick, SP, Vogels, T, Ottenkamp, J, Vliegen, HW. Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart disease. Cardiol Young 2002; 12: 266–271.CrossRefGoogle ScholarPubMed
21. Socialstyrelsen. GUCH – register för vuxna med medfött hjärtfel (cited 2007 March 29). In: The Board of Health and Welfare (Socialstyrelsen) (In Swedish) http://www.socialstyrelsen.se/Amnesord/halso_sjuk/Kvalitetsregister/cirkulationsorganen/kva049.htm; 1998.Google Scholar
22. Cohen, J. A coefficient of agreement for nominal scales. Educational and Psychological Measurement 1960; 20: 37–46.CrossRefGoogle Scholar
23. WHO. A declaration in the promotion of patient′s rights in Europe, Copenhagen: WHO; 1994 (cited 2007 March 29). In: http://www.who.int/genomics/public/eu_declaration1994.pdf; 1994.Google Scholar
24. Eldh, AC. Patient participation – What it is and what it is not (dissertation). Örebro University, Örebro, 2006.Google ScholarPubMed
25. Makoul, G, Arntson, P, Schofield, T. Health promotion in primary care: physician-patient communication and decision making about prescription medications. Soc Sci Med 1995; 41: 1241–1254.CrossRefGoogle ScholarPubMed
26. Florin, J, Ehrenberg, A, Ehnfors, M. Patient participation in clinical decision-making in nursing: A comparative study of nurses’ and patients’ perceptions. J Clin Nurs 2006; 15: 1498–1508.CrossRefGoogle Scholar
27. Lorig, KR, Holman, HR. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 2003; 26: 1–7.CrossRefGoogle ScholarPubMed
28. Kendall, L, Sloper, P, Lewin, RJ, Parsons, JM. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2003; 13: 11–19.CrossRefGoogle ScholarPubMed
29. McMurray, R, Kendall, L, Parsons, JM, et al. A life less ordinary: growing up and coping with congenital heart disease. Coronary Health Care 2001; 5: 51.CrossRefGoogle Scholar
30. Birks, Y, Sloper, P, Lewin, R, Parsons, J. Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2007; 10: 16–29.CrossRefGoogle Scholar
31. Coulter, A, Entwistle, V, Gilbert, D. Sharing decisions with patients: is the information good enough? BMJ 1999; 318: 318–322.CrossRefGoogle ScholarPubMed
32. Skorton, DJ, Garson, A Jr, Allen, HD, et al. Task force 5: adults with congenital heart disease: access to care. J Am Coll Cardiol 2001; 37: 1193–1198.CrossRefGoogle ScholarPubMed
33. Foster, E, Graham, TP, Driscoll, DJ, et al. Task Force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1176.CrossRefGoogle ScholarPubMed
34. Ramsden, P. Learning to teach in higher education, 2nd edition, Falmer Press, Taylor & Francis Group, London, 2003.CrossRefGoogle Scholar
35. Murray, E, Burns, J, See, TS, Lai, R, Nazareth, I. Interactive Health Communication Applications for people with chronic disease. Cochrane Database Syst Rev 2005: CD004274.Google ScholarPubMed