Burström Åsa, Bratt Ewa-Lena, Frenckner Björn, Nisell Margret, Hanséus Katarina, Rydberg Annika, Öjmyr-Joelsson Maria
Institution for Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
Department of Paediatric Cardiology, Astrid Lindgren Children's Hospital, Stockholm, Sweden.
Eur J Pediatr. 2017 Jul;176(7):881-889. doi: 10.1007/s00431-017-2917-9. Epub 2017 May 16.
The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease.
To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process. What is Known: • Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles. • Adolescents often have poor knowledge and understanding about their heart condition and the consequences. What is New: • Adolescents call for disease specific information regarding health issues of importance for them in daily life. • Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.
本研究的目的是探讨患有先天性心脏病（CHD）的青少年认为在转至成人护理准备过程中重要的因素。我们在瑞典的四家大学医院对四个焦点小组中的青少年（14 - 18岁）进行了访谈。使用定性内容分析法对数据进行了分析。分析揭示了一个主要类别：成为病情管理者，以及四个子类别：对健康有足够的了解、参与护理、父母的支持以及就健康问题与他人沟通。青少年的年龄使各小组的讨论有所不同。年龄较大的青少年似乎对过渡计划、信息和转至成人护理更感兴趣。年龄较小的青少年则更多地描述了在沟通和应对疾病方面的挫折感。
为了在日常生活中成为先天性心脏病的管理者，青少年需要特定疾病知识，且应以适合其发育阶段的方式进行沟通。青少年希望参与并融入过渡过程。他们在如何传达自己的先天性心脏病方面需要支持和指导。父母的支持至关重要，但会随时间变化。此外，同伴支持在过渡过程中变得越来越重要。已知信息：• 青少年时期的过渡以及患有先天性心脏病的青少年转至成人护理是复杂的，且角色会发生转变。• 青少年通常对自己的心脏状况及其后果了解不足。新发现：• 青少年要求获得与他们日常生活中重要健康问题相关的特定疾病信息。• 与他人沟通疾病是一项挑战——来自其他患有先天性心脏病青少年的同伴支持可能会有所帮助。
