Educational needs in adults with congenitally malformed hearts

Abstract

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.

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

“…More importantly, although 79% knew about the need for antibiotic prophylaxis, 50% did not know why it was needed. 150 Rönning et al 151 used semistructured open-ended interviews to ask 16 adults (19 to 55 years of age, mean age 28 years) about their experiences in learning about their heart disease. The majority of subjects wished that they had received developmentally appropriate education sessions beginning in early childhood, with added information and continuing reinforcement through adolescence.…”

“…The majority of subjects wished that they had received developmentally appropriate education sessions beginning in early childhood, with added information and continuing reinforcement through adolescence. 151 Although few could specifically describe what information should be provided, the subjects did identify the lack of knowledge about their heart disease as a barrier to taking a more active role in decisions about their treatment and care.…”

Development and evaluation of a computer-based educational program for adults with congenitally malformed hearts

“…Before the content of the prototype was set, an interview study was performed in 16 adults with congenitally malformed hearts in order to explore their educational needs [7]. The program format was decided to be a CD rather than being web-based.…”

“…This group has been found to have a poor level of knowledge about various aspects of their congenital heart malformation and there is a lack of educational materials [2][3][4][5][6]. To date, the education has often been given as verbal information, complemented with pictures of the heart and copies from medical charts, provided by the responsible cardiologist [7]. Another source of information is the Internet.…”

Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts

“…Adults with congenitally malformed hearts often have a poor level of knowledge about various aspects of their cardiac condition and there is a lack of educational materials for this group [1][2][3][4][5] To date, education has often been given as verbal information, complemented with pictures of the heart and copies from medical charts, provided by the responsible cardiologist 6 . Patient education/computer-based education has been shown to increase knowledge and/or management of the disease in people with chronic diseases [7][8][9][10] .…”