Health-related quality of life and everyday life for children with right ventricular outflow tract anomalies. Perspectives from children and parents

Sammanfattning: Background: Children with right ventricular outflow tract (RVOT) anomaliestypically undergo surgical repair during their first months of life and thereafter they will need one or more reoperations through their life.Aims: The overall aim was to describe health-related quality of life (HRQoL) forchildren with congenital heart disease (CHD) with a special focus on children withRVOT anomalies and to explore children’s and their parents’ experiences ofeveryday life during assessment that could result in a new heart surgery.Methods: Two quantitative studies with HRQoL assessment for 337 children withCHD and 97 children with RVOT anomalies were performed. Another twoqualitative interview studies were conducted, in which nine children with RVOTanomalies and their parents were interviewed at three time points (at start of thepreoperative assessment, at the assessment decision and around 11 months after the decision).Results: Children with three or more surgeries had lower HRQoL than children with fewer heart surgeries. Children with RVOT anomalies rated their lowest HRQoL for cognitive function, as did their parents. The agreement for HRQoL between children with RVOT anomalies and their parents was strong for 13 of 22 items. The thematic analysis of the interviews with children resulted in three themes and eight subthemes: Me and my heart disease explores the children’s experiences of their heart disease; Being me explores their sense of self; Being placed in someone else’s hands describes how the assessment was a safety net for the child, at least until the decision for heart surgery. The interviews with parents resulted in five themes: The heart surgery keeps my child alive illuminates’ parents’ experiences related to the assessment: Everyday struggles illuminates the struggles parents had to face on behalf of their child in everyday life; Unconditional love, Trust in life and Togetherness illuminates the ways in which the parents gained inner strength in their everyday lives.Conclusion: By inviting both the child and their parents to participate in the child’s care, individually tailored support can be identified and given.