Living with the memories—parents’ experiences of their newborn child undergoing heart surgery abroad : A qualitative study

Abstract

Parents of children with a congenital heart defect needing complex heart surgery are at high risk of developing health problems. One can assume that parents whose child undergoes heart surgery abroad will undoubtably face added and unique stressors and health vulnerabilities. The aim of this qualitative study was to explore the transition experiences of parents of children who underwent a complex heart surgery abroad as newborns 1–5 years ago. The qualitative content analysis methodology by Graneheim and Lundman was used. A purposive sample of twelve parents, whose child had undergone a heart surgery abroad, participated in face-to-face, semi-structured interviews. Interviews were transcribed and analyzed using inductive qualitative content analysis. The overarching theme of “living with the memories” emerged from parents’ experiences, emphasizing the long-lasting impact this stressful event had on their lives. These experiences were characterized by four main categories: (1) being in an unknown situation; (2) feeling connected; (3) wishing to be accepted; and (4) finding closure. The findings show that the transition of having a newborn child undergo heart surgery abroad superimposed on the expected parenthood. That parents need to feel connected and included as legitimate clients was highlighted in their stories of experienced vulnerabilities. The results highlight the need for interdisciplinary teams to support these vulnerable families, particularly with follow-up care.