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Educational needs in adults with congenitally malformed hearts
Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Medicine, Pain and Rehabilitation Centre.
Linköping University, Department of Medical and Health Sciences, Cardiology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.
Linköping University, Department of Medical and Health Sciences, Cardiology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.ORCID iD: 0000-0002-2608-2062
Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.ORCID iD: 0000-0002-4259-3671
2008 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 18, no 5, 473-479 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2008. Vol. 18, no 5, 473-479 p.
Keyword [en]
Patient experiences, patient information, phenomenographics, qualitative study, patient education, congenital heart disease
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-16123DOI: 10.1017/S1047951108002540OAI: oai:DiVA.org:liu-16123DiVA: diva2:133203
Available from: 2009-01-08 Created: 2009-01-07 Last updated: 2013-09-11
In thesis
1. Follow-up of adults with congenitally malformed hearts with focus on individualised and computer-based education and psychosocial support: A descriptive and interventional study
Open this publication in new window or tab >>Follow-up of adults with congenitally malformed hearts with focus on individualised and computer-based education and psychosocial support: A descriptive and interventional study
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aims: Many adults with congenitally malformed hearts are at risk for complications such as decreased function and capacity of the heart due to the heart defect and previously surgery. This advocates self-management behaviours related to medical treatments, physical activity, preventions of endocarditis, some restrictions regarding suitable employment and spare time activities, birth control and pregnancy, but also lifestyle concerns such as refraining from smoking and healthy eating. Sufficient knowledge and support are requirements for successful self-management. The overall aim of this thesis was to describe educational needs, develop a tool for assessing knowledge and to evaluate the effects of a follow-up model providing education and psychosocial support to adults with congenitally malformed hearts.

Subjects and methods: Adults (≥18 years of age) with the ten most common heart defects namely ventricular septal defect, atrial septal defect, coarctation of the aortae, aortic valve stenosis (defined as uncomplicated heart defects) and tetralogy of Fallot, complete transposition of the great arteries, congenitally corrected transposition of the great arteries, Ebstein anomaly and Eisenmenger syndrome (defined as complicated heart defects) were included in the studies. To apprehend the educational needs (I), sixteen adults with heart malformations, ranging from 19-55 years of age, were interviewed and data were analysed qualitatively using phenomenographic method. As a tool to evaluate knowledge, an instrument named Knowledge scale for adults with Congenital Malformed Hearts (KnoCoMH) was developed and psychometrically evaluated (II) in 19 + 114 adults with the ten most common heart defects average age 34 ± 13.5. A model for follow-up was described and initially evaluated (III) by 55 adults with the most common heart defects and finally tested in a randomised controlled trial (IV) with a total of 114 adults with congenitally malformed hearts (56 participants in intervention group and 58 in control group with average age 34 ± 13.5). The intervention group recived a model for follow-up with individualise and computer-based eduction and psychosocial support by a multidisciplinary team.

Results: Two-way communication when given information was found to be crucial in order to enhance knowledge (I). Knowledge was seen as a tool for managing important areas in life. The KnoCoMH (II) was found to be a valid and reliable scale and can now be used to estimate knowledge in adults with congenitally malformed hearts. The model for follow-up (III) was effective in improving and maintaining knowledge (IV) about self-management in adults with heart malformation.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2011. 109 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1239
Keyword
Congenital heart disease, education, information, instrument development, multidisciplinary team, nursing, phenomenography, psychometrics
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-68677 (URN)978-91-7393-189-2 (ISBN)
Public defence
2011-06-01, Berzeliussalen, Campus US, Linköpings universitet, Linköping, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2011-05-27 Created: 2011-05-27 Last updated: 2013-09-11Bibliographically approved

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Rönning, HelénNielsen, Niels ErikSwahn, EvaStrömberg, Anna

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