“The only thing I wonder is when I will have surgery again”: everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery

Abstract

Many children with complex right ventricle outflow tract anomalies such as Tetralogy of Fallot, common arterial trunk, and pulmonary atresia with ventricular septal defect require repeated heart surgeries early in life, but also later throughout their lifetime, thereby emphasising the importance of careful life-long follow-up. The need for repeated heart surgeries during childhood is recognised as a heavy burden on the child. Optimising the time point for re-intervention is important, since delaying re-intervention for these children can lead to complications such as ventricular arrhythmias, heart failure, and death. To this purpose, thorough pre-operative assessment (henceforth named as assessment) including clinical examination, echocardiography, MRI, and exercise test need to be performed whenever the indication for reoperation is suspected. It is likely to believe that children who are going through this kind of assessment that may lead to heart surgery need extra support. According to previous research, children with complex heart disease fear for the possibility of surgery and the thought of future repeated heart surgery is associated with anxiety. This might have an impact on children’s everyday life and in research nowadays involving children with CHD, the focus has changed from survival to how these children experience their everyday life. Earlier studies have shown that they experience physical activities limitation and feelings of isolation, but no study has yet studied how children with right ventricle outflow tract anomalies experience their everyday life. To be able to provide support, studies are needed to explore how these children experience the period from assessment to decision, as well as the months thereafter. Therefore, the aim of this study was to explore how children diagnosed with complex right ventricle outflow tract anomalies experience their heart disease and their everyday life during the assessment and after the decision on whether to perform a new cardiac surgery.

“I Dread the Heart Surgery but it Keeps My Child Alive”—Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation

“…In the present study, six month after surgery, the parents experienced relief and strength with traces of adaptation. We have earlier shown that their children adapted to managing their heart disease in their everyday life and could cope with the knowledge that future heart surgeries were likely [9]. An adaptation and development of strategies for managing the child's CHD is shown to be essential to coping for parents too [3], and this adaptation process may affect their need for support which could be valuable information for the health care providers.…”

“…This need for repeated operations, that the child will never be free of the fear of surgery, is a challenge for the parents. This challenge may have contributed to an adaptation process, perhaps facilitated by their child's inner strength and well-being thus far [9]. They had adapted to and developed strategies for suppressing their worries and anxiety until the more critical situations, especially when a reoperation become a reality.…”

“…The repeated assessment for children with RVOT anomalies can guide the need for reoperation, so it is important to be aware of how parents experience this period of uncertainty, from the start of the assessment until they receive a decision about their child's need for further surgery. How their children experience everyday life during and after this assessment, has been described in a recently published study by our group [9] which showed that the children's fear of surgery was awoken at the start of the assessment; however, this fear had no impact on their everyday life until the decision about the need for reoperation. To the best of our knowledge, this is the first study to explore the experiences of everyday life for parents of children with RVOT anomalies during a period covering the preoperative assessment through the decision making and after reoperation, when the last interview was conducted.…”