Ghent University Hospital - Department of Adult Congenital Heart Disease, Belgium.
Ghent University - Faculty of Medicine and Health Sciences -Department of Public Health and Primary Care - University Center for Nursing and Midwifery, Ghent, Belgium.
J Pediatr Nurs. 2021 Nov-Dec;61:90-95. doi: 10.1016/j.pedn.2021.03.016. Epub 2021 Mar 31.
Most patients with congenital heart disease (CHD) need lifelong cardiac follow-up. Transitioning to adulthood and transferring to adult-focused care are often challenging. We explored the experiences and needs of adolescents with CHD and parents during the entire transitional process, including the post-transfer period.
We performed a qualitative study according to the phenomenological approach, focusing on adolescents with CHD and parents. Semi-structured interviews were carried out with patients (n = 9) and parents (n = 12) after being transferred to adult care facilities. Data were analyzed with inductive thematic analysis. Data collection and -analysis of both samples were done separately in a first step, after which results were merged to discover common themes.
Five common themes were identified: 1) Having mixed feelings about leaving pediatric care; 2) Being prepared and informed; 3) Shifting responsibilities and roles; 4) Being accompanied during consultations; and 5) Gaining trust in new healthcare providers.
Adolescents with CHD and parents express a need for adequate preparation and personalized guidance to reduce anxiety and uncertainty during transition. The process may benefit from focusing on improving the adolescents´ transitional skills and disease-related knowledge, which may, in turn, facilitate handing over responsibilities and adapting to new roles by the parents. Adolescents appreciate the presence of parents during the consultation, albeit with reduced input. Finally, a transition coordinator and a joint transfer consultation involving the pediatric cardiologist seem paramount for a fluent transitional process, especially in establishing new treatment relationships.
大多数先天性心脏病（CHD）患者需要终身心脏随访。过渡到成年期并转至以成人为中心的护理往往具有挑战性。我们探讨了整个过渡过程中，包括转至成人护理机构后的青少年 CHD 患者及其父母的经历和需求。
我们根据现象学方法进行了定性研究，重点关注 CHD 青少年及其父母。在转至成人护理机构后，对患者（n=9）和父母（n=12）进行了半结构化访谈。使用归纳主题分析对数据进行分析。首先分别对两个样本进行数据收集和分析，然后合并结果以发现共同主题。
确定了 5 个共同主题：1）对离开儿科护理感到矛盾；2）做好准备和知情；3）转移责任和角色；4）在咨询时得到陪伴；5）对新医疗保健提供者建立信任。
CHD 青少年及其父母表示需要充分的准备和个性化指导，以减少过渡期间的焦虑和不确定性。该过程可能受益于专注于提高青少年的过渡技能和疾病相关知识，这反过来又有助于父母减轻责任并适应新角色。青少年希望在咨询时得到父母的陪伴，尽管他们的参与度有所降低。最后，过渡协调员和包括儿科心脏病专家在内的联合转介咨询对于平稳的过渡过程至关重要，特别是在建立新的治疗关系方面。
