Bratt E L, Burström Å, Hanseus K, Rydberg A, Berghammer M
Institution of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden.
Department of Pediatric Cardiology, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
Child Care Health Dev. 2018 Mar;44(2):278-284. doi: 10.1111/cch.12529. Epub 2017 Oct 5.
Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.
Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.
The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.
Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.
患有先天性心脏病（CHD）长大通常意味着转至成人医疗体系并接受终身医学随访。一个优化的过渡过程通常需要患者、其父母及其他家庭成员与医疗服务提供者之间的多方协作。对于所有相关方而言，即便对医疗专业人员来说，积极参与其中同时又知道何时该放手也并非易事。因此，本研究的目的是探讨在青少年从儿科向成人医疗过渡期间父母的期望和需求。
在瑞典的4个儿科心脏病学机构，对16名患有CHD的青少年（年龄在13 - 18岁）的18位父母进行了半结构式访谈。采用定性内容分析法对访谈进行分析。
分析得出2个主要主题：（a）感到安心——做好准备并了解信息的重要性。该主题聚焦于对过渡以及未来转至成人医疗做好准备并了解相关信息的需求。（b）认识到何时适时放手。该主题涉及将责任从父母转交给青少年的过程，包括从儿科护理转至成人护理。
对即将到来的过渡过程做好准备并了解相关信息至关重要。父母强调了参与过渡计划以便逐步将责任移交给青少年的重要性。他们还认为在转至成人医疗之前与成人医疗团队建立联系很重要，并且需要确保会提供对年轻人日常生活至关重要的与CHD相关的信息。
