Abstract：
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.
摘要：
对先天性心脏病（CHD）儿童兄弟姐妹的研究很少，尽管超过三分之一的人生活质量受到限制。这项访谈研究旨在探索德国冠心病儿童兄弟姐妹的诊断相关经验，他们对潜在干预的兴趣，以及这种干预的潜在关键主题和背景条件。2021年8月至10月，对10名10至21岁的兄弟姐妹和各自的父母进行了采访，结果进行了20次采访。与冠心病相关的负面经历包括对住院的担忧，健康恶化,以及患有冠心病的孩子的死亡，以及包括减少家庭活动在内的负担，父母的关注和支持较少，和扩展的家庭餐。积极的经验包括冠心病的积极后果，例如强大的家庭凝聚力和对慢性病患者的同理心。此外，兄弟姐妹经历了增强的应对机制，例如与朋友和家人就冠心病的高患病率和成功的治疗进行对话，或者使用娱乐或学习等干扰。兄弟姐妹报告对未来干预的兴趣包括同情，同行支持，研究冠心病的医学信息。这些发现应用于咨询和开发量身定制的干预措施，以支持这些兄弟姐妹。
