Levison H, Garner D, MacMillan H, Cowen L
Hospital for Sick Children, Toronto, Ontario, Canada.
Compr Ther. 1987 Oct;13(10):38-45.
The challenge for patient, family, and healthcare professionals alike is to separate the disease's insidiousness from the potential the patient and family have to enjoy life within the patient's abbreviated life span. We must emphasize that most patients with CF and their families do make a successful psychological adjustment. Simultaneously, parents must fulfill the varied physical and psychological needs of the child. A young adult patient with CF summarizes the patient's task: "Projecting a life goal, living it, having the goal altered by luck and by fate, accomplishing that goal, and then reflecting on what has been done. That is life. That is a life compressed for us; CF is myopic. We cannot look through the long vista of life. That is disappointing, frustrating, and cursed at. We can live now. We can do the best we can. Set goals that fit on our playing field and accomplish them." An emotionally adjusted family makes the patient's task possible. Achieving the goal of adequate adjustment also depends on the physician's having the medical expertise to manage this complex multisystem illness and the ability to make the medical knowledge comprehensible for patient and family.
患者、家属以及医护人员面临的共同挑战是，要将疾病的隐匿性与患者及其家属在患者有限的寿命内享受生活的潜力区分开来。我们必须强调，大多数囊性纤维化患者及其家属确实能成功地进行心理调适。与此同时，父母必须满足孩子在生理和心理上的各种需求。一位患有囊性纤维化的年轻成年患者总结了患者的任务：“设定一个人生目标，去实现它，因运气和命运而改变目标，完成这个目标，然后反思所做的一切。这就是生活。这是我们被压缩的生活；囊性纤维化让我们目光短浅。我们无法展望漫长的人生。这令人失望、沮丧且遭人诅咒。但我们现在可以生活。我们可以尽我们所能。设定适合我们自身范围的目标并去实现它们。”一个情绪调适良好的家庭能让患者完成任务。实现充分调适的目标还取决于医生具备管理这种复杂多系统疾病的医学专业知识，以及让患者和家属理解医学知识的能力。
