Schamong Alice Sarah, Seven Ümran Sema, Folkerts Ann-Kristin, Brockmeier Konrad, Kalbe Elke
Faculty of Medicine and University Hospital Cologne, Paediatric Cardiology, University of Cologne, Koln, Germany.
Department of Medical Psychology | Neuropsychology & Gender Studies and Center for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine and University Hospital Cologne, University of Cologne, Koln, Germany.
J Child Health Care. 2024 Aug 14:13674935241273982. doi: 10.1177/13674935241273982.
Research with siblings of children with congenital heart disease (CHD) is scarce, although more than one-third of them experience limitations on their quality of life. This interview study aims to explore the diagnosis-associated experience of German siblings of children with CHD, their interest in a potential intervention, and potential key topics and contextual conditions of such an intervention. Interviews with 10 siblings aged 10 to 21 and a respective parent were conducted from August to October 2021, resulting in 20 interviews. Negative experiences associated with CHD included concerns regarding hospitalization, health deterioration, and the death of the child with CHD, as well as burdens including reduced family activities, less parental attention and support, and extended family meals. Positive experiences included perceived positive consequences of CHD, such as strong family cohesion and empathy toward people with chronic illnesses. Furthermore, siblings experienced enhanced coping mechanisms, such as having conversations with friends and family about the high prevalence of CHD and successful treatment or using distractions such as entertainment or study. Siblings' reported interest in a future intervention included empathy, peer support, and studying medical information on CHD. These findings should be used for counseling and developing tailored interventions to support these siblings.
