Experiences of young adults who have transferred from paediatric to adult congenital heart disease services

Abstract

Background/Aims Congenital heart disease services are continuing to develop, yet little is known about the experiences of those who have transitioned from paediatric to adult services in the UK. This study explored patients' perceptions and lived experiences of this process to identify factors that contribute to positive and negative experiences, with the view of devising strategies to improve transition. Methods A phenomenological hermeneutical study was conducted using semi-structured interviews. The experiences of six young adults (aged 20–24 years) who had transitioned from paediatric to adult congenital heart disease services were explored. Results Participants saw transition as a milestone and they generally accepted outgrowing paediatric services, despite maintaining a sense of nostalgia for this time. Adjustment to a new service was ongoing and parental support was valued, although issues such as anxiety could be a barrier to the participant assuming responsibility for their own care. Good communication with healthcare professionals, involving individualistic care, consistency and patience, was perceived as a positive influence in adapting to the new service. Conclusions Participants mainly had positive experiences of transition from paediatric and adult congenital heart disease services, with parental and healthcare professional support being valued during and after transition. Healthcare professionals must integrate assessment of physical and psychological needs to support and empower patients and families in order to deliver a smooth transition into adult life and care.