“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

作     者：Birgitta Svensson Petru Liuba Anne Wennick Malin Berghammer 

作者机构：Department of CardiologyPediatric Heart CenterSkåne University HospitalLundSweden Department of Clinical Sciences LundPediatricsLund UniversityLundSweden Department of Care ScienceFaculty of Health and SocietyMalmöUniversityMalmöSweden Department of PaediatricsThe Queen Silvia Children’s HospitalGothenburgSweden The Department of Health SciencesUniversity WestTrollhättanSweden 

出 版 物：《Congenital Heart Disease》 (先天性心脏病（英文）)

年 卷 期：2023年第18卷第3期

页      面：349-359页

核心收录：

学科分类：1002[医学-临床医学] 100201[医学-内科学(含：心血管病、血液病、呼吸系病、消化系病、内分泌与代谢病、肾病、风湿病、传染病)] 10[医学] 

基　　金：This study was supported by the Pediatric Heart Center at Skåne University Hospital Lund and Lund University and by the Swedish Children’s Heart Association 

主　　题：Parents children right ventricular outflow tract anomalies everyday life heart surgery reflexive thematic analysis 

摘      要：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 *** assessment needs to be performed whenever an indication for reoperation is *** 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 ***:Individual interviews(n=27)were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic ***: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 ***: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 *** 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.