"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

Background: Parents of children with complex right ventricular outflow tract ( RVOT) anomalies are confronted with their child's need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child's heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents' experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child's survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experienced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child's care, individualized support can take into account the needs of both parents and child.