Pedersen Lene Hyldgaard, Hjortdal Vibeke Elisabeth
Arhus Universitetshospital, Skejby Sygehus, Hjerte-lunge og Karkirurgisk Afdeling T.
Ugeskr Laeger. 2007 May 7;169(19):1797-800.
An increasing number of grown-ups survive treatment for congenital heart disease due to improved prognostics for this group over the last decades. However, a smaller group of patients cannot be fully cured and encounter problems that require lifelong medical follow-up. This study examines how grown-ups with congenital heart disease (GUCH) understand their illness and body and describes the social and familial implications of the disease.
The study is based on participant observation in the GUCH patient organization, Hjerteungdom, and 11 semi-structured interviews with informants--all born with a severe congenital heart disease e.g. single ventricle, Steno Fallot, and transposition.
The informants try to compensate for the lack of physical performance by adapting to alternative rolls during physical activity and pursuing academic interests in order to obtain social recognition. The informants wish to define themselves as competent and normal young adults in public life in order to avoid being treated as ill. At the same time the informants need to discuss health concerns openly, which they have traditionally done with their parents as they know their entire medical history.
The informants experience limitations in their physical and social activities, but they try to adjust to living with a chronic disease and in this way they experience that the condition is controlled and mastered. GUCH patients can benefit from including personal and family issues in medical counselling because it can help them to cope with the disease in everyday life.
由于过去几十年里对先天性心脏病成年患者的预后预测有所改善，越来越多的成年人在先天性心脏病治疗后存活下来。然而，仍有一小部分患者无法完全治愈，会遇到需要终身医学随访的问题。本研究考察了先天性心脏病成年患者（GUCH）如何理解自己的疾病和身体，并描述了该疾病对社会和家庭的影响。
本研究基于对先天性心脏病成年患者组织Hjerteungdom的参与观察，以及对11名受访者进行的半结构化访谈，所有受访者均患有严重的先天性心脏病，如单心室、法洛四联症和大动脉转位。
受访者试图通过在体育活动中适应其他角色以及追求学术兴趣来弥补身体机能的不足，以获得社会认可。受访者希望在公共生活中将自己定义为有能力且正常的年轻人，以避免被当作病人对待。与此同时，受访者需要公开讨论健康问题，传统上他们会与父母讨论，因为父母了解他们的完整病史。
受访者在身体和社交活动中经历了限制，但他们试图适应慢性病生活，通过这种方式，他们感到病情得到了控制。先天性心脏病成年患者可以从将个人和家庭问题纳入医学咨询中受益，因为这可以帮助他们在日常生活中应对疾病。
