Abstract
Purpose: The number of adults with GUCH (Grown Up Congenital Heart disease) is growing and they need continuous follow up in the health care. There is a lack of knowledge regarding how, by whom and with what content structured follow-up, education and psychosocial support should be given and what effects it can achieve.
The development of structured educational programmes needs to start from the perspectives of the individuals. The aim of this study was, therefore to describe how adults with GUCH perceived the information they had received about their congenital heart disease.
Method: A qualitative, phenomenographic study was performed. The sample was strategic and 10 interviews were performed with adults with GUCH between 19–52 years of age. Six of the informants were men. Seven persons worked full time and the rest worked between 75–92%. The medical diagnoses were Marfans syndrome, Coarctatio aortae, Congenital aortic stenosis, Tetralogy of Fallot, Transposition of the great arteries, Pulmonalisatresi, Single ventricle, Ebsteins anomaly.
Results: The analysis of the 10 interviews resulted in 225 conceptions comprehensively showing that information, which was given sincerely and individualised, gave a sense of participation and manageability.
Adults with GUCH wanted to be informed in a sincere, honest and correct way about changes irrespectively, of if it was good or bad news. The information should be repeated and given both written and verbally, in a group and individually. They requested information that was individualised and holistic. They did not want general advices that were vague and could apply to anyone. The information helped them to be partners in care, in control and able to manage different situations that could arise due to the heart disease. There were also conceptions about not wanting to be more involved and informed. Some of the adults with GUCH preferred to wait until the day they became sicker. At present they had not experienced situations where they needed more information.
The adults with GUCH did not state in detail what specific information they requested. They relyed on the health care professionals as being the experts and knowing the relevant information.
Conclusion: The result underlines the importance of how the information is presented and supports the needs for structured, individualised education programmes in adults with GUCH. However, since there is a lack of knowledge regarding the effect of structured follow-up, education and psychosocial support further research is needed evaluating the effects of these interventions.