Nursing Division, Department of Medical and Surgical Gastroenterology, Karolinska University Hospital, SE-141 86 Stockholm, Sweden.
Disabil Rehabil. 2010;32(1):1-7. doi: 10.3109/09638280903178407.
The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care.
To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences.
A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective.
After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'.
The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.
描述患有埃勒斯-当洛斯综合征（EDS）的个体在就医时，其尊严未得到充分维护的经历，并进一步描述这些经历的长期后果。
设计了一份特定于研究的问卷，让 EDS 患者从个人角度描述他们与医疗保健的接触情况。
经过定性内容分析，确定了以下五个类别：“被医疗保健专业人员忽视和轻视”、“被赋予心理和/或精神科解释”、“被当作纯粹的客体对待”、“个人领域被侵犯”和“被怀疑家庭暴力”。这些遭遇的后果是“不信任医生”和“健康状况恶化的风险”。
对于患有 EDS 的个体来说，不被尊重的记忆是深刻的，并且可能会持续多年。因此，他们对医疗体系产生了不信任，并且在未来与医疗保健的接触中可能会遇到困难。因此，医疗保健专业人员应该将保护人类尊严的规范作为行动基础，确认每位患者都是具有资源和能力掌控自己生活的独特个体。
