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"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
Lund University.
Lund University.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8684-2537
The Queen Silvia Children’s Hospital, Gothenburg; University West, Trollhättan.
2023 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 33, no 3, p. 396-401Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Cambridge University Press, 2023. Vol. 33, no 3, p. 396-401
National Category
Cardiac and Cardiovascular Systems
Identifiers
URN: urn:nbn:se:mau:diva-51014DOI: 10.1017/S1047951122000907ISI: 000775661500001PubMedID: 35351230Scopus ID: 2-s2.0-85128447662OAI: oai:DiVA.org:mau-51014DiVA, id: diva2:1650933
Available from: 2022-04-08 Created: 2022-04-08 Last updated: 2023-07-04Bibliographically approved

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Wennick, Anne

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