Rivera-Navarro Jesús, Cubo Esther, Almazán Javier
Salamanca University, Spain.
Clin Child Psychol Psychiatry. 2009 Jan;14(1):13-23. doi: 10.1177/1359104508100127.
No study to date has investigated differences in perception regarding the manner in which a diagnosis of Tourette's Syndrome (TS) is communicated and the impact that this diagnosis can have on patients, as well as their relatives and physicians. The main objective was to explore the personal experiences regarding the communication and impact of a TS diagnosis on those who receive the diagnosis, their caregivers and physicians. A qualitative research methodology was used in this study, based on the use of focus groups (FGs). All health professionals, persons with TS and their relatives said that TS was difficult to diagnose. However, each group perceived different causes for the difficulty. Physicians cited the complexity of the symptoms, while the patients themselves noted the general lack of knowledge regarding the disease. In adittion, the physicians and the relatives both noted that the symptoms of TS were often hidden behind family guilt. The communication of the diagnosis to relatives of children with TS was not adequate because of poor understanding and interpretation of the clinical terminology. The most important conclusion was that the current method for communicating the diagnosis of TS to patients and relatives should be improved to facilitate better understanding and interpretation.
迄今为止，尚无研究调查在抽动秽语综合征（TS）诊断告知方式上的认知差异，以及该诊断对患者及其亲属和医生可能产生的影响。主要目的是探索TS诊断的告知及影响对于接受诊断者、其照料者和医生的个人经历。本研究采用了基于焦点小组（FGs）的定性研究方法。所有卫生专业人员、TS患者及其亲属均表示TS难以诊断。然而，每个群体认为困难的原因各不相同。医生指出症状复杂，而患者自身则提到对该疾病普遍缺乏了解。此外，医生和亲属都指出TS症状常常隐藏在家庭内疚背后。由于对临床术语理解和解读不足，向TS患儿亲属传达诊断的情况并不理想。最重要的结论是，应改进目前向患者和亲属传达TS诊断的方法，以促进更好的理解和解读。
