“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

AbstractBackground:Children with right ventricle outflow tract anomalies require repeated heart surgeries, thereby needing regular preoperative assessments throughout their lifetime. This situation puts a heavy burden on these children. Thus, the aim of this study was to explore how children diagnosed with right ventricle outflow tract anomalies experience their heart disease and their everyday life during the preoperative assessment and after the decision on whether to perform a new cardiac surgery.Methods:Individual interviews were conducted with nine children between 9 to 17 years of age on three occasions from 2014 to 2016. In total there were 27 interviews which all were analyzed with thematic analysis.Results:The analysis yielded three themes and eight subthemes. The theme Me and my heart diseaseconcerns children’s experiences of the heart disease. Almost all described symptoms and how they adapt in their everyday life. The theme Being meconcerns the children’s sense of self, where their heart disease was not prominent. The theme Being placed in someone else’s handsdescribes how the assessment was more of a safety net at least until the decision of heart surgery.Conclusion:The children’s symptoms, their experiences during the assessment, their future surgeries and how the heart disease affects their everyday life could be better understood as elements of their adaptation to the heart disease. In order to achieve individualized support based on the child’s experiences and to ensure that these children are involved in their own care a child-centered approach is recommended.