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Follow-up of adults with congenitally malformed hearts with focus on individualised and computer-based education and psychosocial support: A descriptive and interventional study
Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
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 [en]
Congenital heart disease, education, information, instrument development, multidisciplinary team, nursing, phenomenography, psychometrics
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-68677ISBN: 978-91-7393-189-2OAI: oai:DiVA.org:liu-68677DiVA: diva2:419585
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
List of papers
1. Educational needs in adults with congenitally malformed hearts
Open this publication in new window or tab >>Educational needs in adults with congenitally malformed hearts
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.

Keyword
Patient experiences, patient information, phenomenographics, qualitative study, patient education, congenital heart disease
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-16123 (URN)10.1017/S1047951108002540 (DOI)
Available from: 2009-01-08 Created: 2009-01-07 Last updated: 2013-09-11
2. Development and psychometric evaluation of the knowledge scale for adults with congenitally malformed hearts
Open this publication in new window or tab >>Development and psychometric evaluation of the knowledge scale for adults with congenitally malformed hearts
Show others...
2013 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 28, no 3, 228-237 p.Article in journal (Refereed) Published
Abstract [en]

Background and Research Objective: Adults with congenitally malformed hearts have knowledge gaps regarding their heart condition, and their level of knowledge is not routinely assessed during follow-up. One reason for this is that there are few validated, user-friendly questionnaires to assess knowledge about congenital heart disease and its effects on daily life. Failure to identify low levels of knowledge could lead to less motivated and insecure individuals not actively involved in treatment and care of their heart condition. Therefore, the objective of this study was to develop and test a knowledge scale for adults with congenitally malformed hearts.

Participants and Methods: The development and psychometric evaluation of the Knowledge Scale for Adults With Congenitally Malformed Hearts (KnoCoMH) followed 2 phases: (1) development and evaluation of the initial version, with face validity and content validity assessed by experts and adults with congenitally malformed hearts, and (2) evaluation and refinement of the KnoCoMH in adults with congenitally malformed hearts, including item difficulty level, internal consistency, and test-retest reliability.

Results: The development and evaluation of a knowledge scale for adults with congenitally malformed hearts resulted in the KnoCoMH including 46 items in 4 domains: General Knowledge, with a Kuder-Richardson formula 20 (KR-20) value of 0.68; Medical Treatment, with a KR-20 value of 0.74; Endocarditis Prophylaxis, with a KR-20 value of 0.90; and Contraceptives and Pregnancy, with a KR-20 value of 0.65. Test-retest evaluation showed significant correlations between 0.50 and 0.67 (P < .01) in all 4 domains. There was good variation in item difficulty, with a mean value of 0.56 in General Knowledge, 0.62 in Medical Treatment, 0.33 in Endocarditis Prophylaxis, and 0.48 in Contraceptives and Pregnancy.

Conclusions: The KnoCoMH has acceptable psychometric properties for most of the knowledge domains included. It can be used for evaluating knowledge among adults with congenitally malformed hearts and its associations with other outcomes. However, further studies are advisable to test construct validity, predictive validity, and responsiveness.

Keyword
adults with congenital heart disease, patient education, patient information, instrument development, learning
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-68674 (URN)10.1097/JCN.0b013e3182498785 (DOI)000317592700006 ()
Available from: 2011-05-27 Created: 2011-05-27 Last updated: 2013-10-08Bibliographically approved
3. Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts
Open this publication in new window or tab >>Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts
2011 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 83, no 2, 247-251 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Various programmes for adults with congenitally malformed hearts have been developed, but detailed descriptions of content, rationale and goals are often missing. The aim of this study was to describe and make an initial evaluation of a follow-up model for adults with congenitally malformed hearts, focusing on education and psychosocial support by a multidisciplinary team (EPS).

METHODS: The model is described in steps and evaluated with regards to perceptions of knowledge, anxiety and satisfaction.

RESULTS: The EPS model included a policlinic visit to the physician/nurse (medical consultation, computer-based and individual education face-to-face as well as psychosocial support) and a 1-month telephone follow-up. Fifty-five adults (mean age 34, 29 women) with the nine most common forms of congenitally malformed hearts participated in the EPS model as well as the 3-months follow-up. Knowledge about congenital heart malformation had increased in 40% of the participants at the 3-months follow-up.

CONCLUSION: This study describes and evaluates a model that combines a multidisciplinary approach and computer-based education for follow-up of adults with congenitally malformed hearts. The EPS model was found to increase self-estimated knowledge, but further evaluations need to be conducted to prove patient-centred outcomes over time.

PRACTICE IMPLICATIONS: The model is now ready to be implemented in adults with congenitally malformed hearts.

Place, publisher, year, edition, pages
Elsevier, 2011
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-68675 (URN)10.1016/j.pec.2010.06.015 (DOI)000290929200019 ()20634025 (PubMedID)
Note
Original Publication: Helén Rönning, Niels Erik Nielsen, Eva Swahn and Anna Strömberg, Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts, 2011, Patient Education and Counseling, (83), 2, 247-251. http://dx.doi.org/10.1016/j.pec.2010.06.015 Copyright: Elsevier Science B.V., Amsterdam. http://www.elsevier.com/ Available from: 2011-05-27 Created: 2011-05-27 Last updated: 2013-09-11Bibliographically approved
4. Evaluation of knowledge, perceived control, symptoms of anxiety and depression related to a model for follow-up in adults with congenitally malformed hearts: a randomised control trial
Open this publication in new window or tab >>Evaluation of knowledge, perceived control, symptoms of anxiety and depression related to a model for follow-up in adults with congenitally malformed hearts: a randomised control trial
2011 (English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: To evaluate the effects of a model including computer-based and individualised education and psychosocial support for adults with congenitally malformed hearts.

Design: Prospective randomised controlled multicentre trial.

Setting: Four hospital outpatient clinics in Sweden.

Participants: Adults with congenitally malformed hearts.

Interventions: Comparing usual care twith education and psychosocial support by a multidisciplinary team.

Main Outcome Measures: Knowledge and perceived control regarding the heart condition, and symptoms of anxiety and depression at baseline, 3 and 12-months follow-up.

Results: Out of 114 included participants, 58 were randomised to the control group, and 56 to the intervention group. The average age was 34 (SD 13.5) years. Results showed a significant between-group treatment effect in general knowledge after 3 months (effect size 0.63, p=<0.01), and 12-month (effect size 0.53, p= 0.02). Knowledge regarding endocarditis also increased significantly between-group after 3 months (effect size 0.87, p= <0.01), and over time between baseline and 3 months (effect size 1.43, p=<0.001), and between baseline and 12-months (effect size 0.58, p= 0.02). There were no changes in knowledge in domains regarding self-management of medical treatment and contraceptives and pregnancy in any of the groups. Further, the intervention did neither increase nor decrease the perceived control over the heart condition or symptoms of anxiety and depression.

Conclusion: Education and psychosocial support by a multidisciplinary team was effective in improving and maintaining knowledge about self-management in adults with heart malformation. Future research is needed to determine the long-time effects on selfmanagement behaviours and perceived control.

Keyword
Congenital heart disease, hospital outpatient clinic, follow-up studies, computer program, patient education
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-68676 (URN)
Available from: 2011-05-27 Created: 2011-05-27 Last updated: 2013-09-11Bibliographically approved

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