Dept. of Clinical Sciences, Umeå University, Umeå, Sweden. Dept. of Clinical Sciences, Umeå University, Umeå, Sweden.
J Rehabil Med. 2013 Nov;45(10):1023-7. doi: 10.2340/16501977-1226.
Traumatic spinal cord injury is typically a devastating event, leading to permanent physical disability. Despite the severity of the condition, many persons with traumatic spinal cord injury manage to lead both active and independent lives. The aim of this study was to investigate the experience of health and wellbeing of persons living with a traumatic spinal cord injury for at least 20 years.
A qualitative design was used. Data was analysed using a phenomenological-hermeneutical method. Rich narratives were obtained from 14 persons with paraplegia due to traumatic spinal cord injury sustained at least 20 years ago.
The key finding was that health and wellbeing were attained when persons were able to perceive themselves as being "normal" in everyday relationships and circumstances. The normalization process involved learning to negotiate and/or prevent potentially embarrassing situations by acting in a "parallel world", covertly "behind the scenes".
The subjective experience of wellbeing and health after traumatic spinal cord injury depends upon the ability to prevent or resolve potentially embarrassing situations without this being noticed by others. Performing this work "behind the scenes", enables persons with traumatic spinal cord injury to interact smoothly with others and thereby be perceived as normal, despite substantial disability.
外伤性脊髓损伤通常是一种毁灭性的事件，导致永久性的身体残疾。尽管病情严重，但许多外伤性脊髓损伤患者仍设法过上积极和独立的生活。本研究旨在调查至少 20 年外伤性脊髓损伤患者的健康和幸福感体验。
采用定性设计。使用现象学-解释学方法对数据进行分析。从 14 名因外伤性脊髓损伤导致截瘫且至少 20 年前受伤的患者中获得了丰富的叙述。
主要发现是，当患者能够在日常关系和环境中感知自己是“正常”的时，他们就能够获得健康和幸福感。这个正常化的过程涉及到通过在“平行世界”中以隐蔽的方式“幕后”行动，来学习协商和/或预防潜在尴尬的情况。
外伤性脊髓损伤后幸福感和健康的主观体验取决于患者是否有能力预防或解决潜在尴尬的情况，而不被他人注意到。通过这种“幕后”工作，外伤性脊髓损伤患者能够与他人顺利互动，从而被视为正常，尽管存在严重残疾。
