Comenius University in Bratislava, Slovakia.
Palacký University in Olomouc, Czech Republic.
Nurs Ethics. 2020 May;27(3):686-700. doi: 10.1177/0969733019897766. Epub 2020 Jan 29.
Dignity is a fundamental concept in healthcare. The symptoms of multiple sclerosis have a negative effect on dignity. Understanding of lived experience of dignity in people with multiple sclerosis is crucial to support dignity in practice.
The aim was to explore the sense of dignity experienced by people with multiple sclerosis.
An interpretative phenomenological analysis design was adopted, using data collected through face-to-face interviews with 14 participants.
The study was approved by the faculty Ethical Committee (No. EC 1828/2016).
Four interconnected superordinate themes emerged from analysis: ; ; ; and . The loss of former fully-fledged life has a dramatic impact on integrity and impaired dignity-of-self. Accepting illness and changed identity impaired by multiple sclerosis was the step that the participants considered to be important for reacquiring the sense of dignity. The participants encountered misunderstandings, prejudices, embarrassment, insensitive remarks, labelling, unwillingness and impersonal treatment as indignities. Acceptance of their condition, needed support, the feeling of being part of a group, sensitivity and the sharing of problems had a positive effect on their dignity.
Continual changes in functional ability threaten an individual's identity and were experienced as violations of dignity. Based on this, participant's dignity-of-self was not a moral, but much more existential value. Acceptance of changed identity and fighting spirit were important for restoring their dignity-of-self. The misunderstandings, prejudices and unwillingness had a negative impact on their dignity-in-relation. On the other side, support from others in fighting promoted their dignity-in-relation.
Dignity is manifested as a complex phenomenon of lived experience of people with multiple sclerosis and also an umbrella concept for providing good quality of person-centred care.
尊严是医疗保健中的一个基本概念。多发性硬化症的症状对尊严有负面影响。了解多发性硬化症患者的尊严体验对于在实践中支持尊严至关重要。
本研究旨在探讨多发性硬化症患者的尊严感。
采用解释性现象学分析设计，通过与 14 名参与者进行面对面访谈收集数据。
该研究得到了学院伦理委员会（编号：EC 1828/2016）的批准。
从分析中得出四个相互关联的上位主题：；；；和。以前完整生活的丧失对完整性和受损的自我尊严产生了巨大影响。接受多发性硬化症带来的疾病和改变的身份是参与者认为对重新获得尊严感很重要的一步。参与者遇到了不理解、偏见、尴尬、麻木不仁的言论、贴标签、不愿意和非人性化的待遇，这些都是不尊重的表现。对他们病情的接受、所需的支持、作为群体一部分的感觉、敏感性以及问题的分享对他们的尊严感产生了积极的影响。
功能能力的持续变化威胁到个人的身份，并被视为对尊严的侵犯。基于此，参与者的自我尊严不是道德的，而是更具存在主义的价值。接受改变的身份和奋斗精神对于恢复自我尊严至关重要。误解、偏见和不愿意会对他们的关系尊严产生负面影响。另一方面，他人在奋斗中提供的支持则促进了他们的关系尊严。
尊严表现为多发性硬化症患者的尊严体验的复杂现象，也是提供以患者为中心的优质护理的伞式概念。
