The transition to adult care for patients with congenital heart disease: Nurses' experiences. A qualitative study

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background Most children with congenital heart disease survive into adulthood. The transition from pediatric care to adult care can be experienced as abrupt and uncomprehensive for these patients. The nurses play a critical role in the transition process. There is a lack of research highlighting the perspective of the nurses caring for grown-ups with congenital heart disease (GUCH). Purpose To explore the nurses’ experiences related to the transition to adult care for patients with congenital heart disease. Methods Qualitative methods with three focus group interviews were conducted at one university hospital in Norway. We included ten nurses from both the adult outpatient clinic and the cardiac ward. Data were collected between October 2022 and January 2023, and transcripts were analyzed using thematic analysis by Braun and Clarke. Results Three themes were defined; i) transition without communication, ii) nurses lacking knowledge about the transition process, and iii) challenges in interaction with GUCH patients. The first theme illustrates that communication regarding the transition is experienced as unpredictable. Secondly, the ward nurses identified the need for knowledge about the routines and the transition process. Thirdly, the nurses lack knowledge about the patient’s individual transition experiences. Conclusion Our study showed that the nurses request more communication and knowledge regarding the transition process to be prepared and able to care for patients with congenital heart disease into adulthood. To include the patient perspective, there is also a need for improved knowledge about the patients’ and parents' perspectives for a successful transition of GUCH patients.