Travers Michele Kerry, Lawler Jocalyn
Faculty of Nursing & Midwifery, University of Sydney, Australia.
Soc Sci Med. 2008 Jan;66(2):315-26. doi: 10.1016/j.socscimed.2007.09.003. Epub 2007 Oct 24.
Chronic fatigue syndrome (CFS) is a contested condition associated with scepticism and dispute. This qualitative project examines the illness experiences, and specifically the experiences of self, for people affected with CFS living in Australia. Using grounded theory methods, theory related to the process of self-renewal and adaptation associated with CFS is explicated. Narratives were derived from semi-structured interviews with 19 adults, including 3 people recovered from CFS. Analysis generated the narrative of the struggling self seeking renewal that defined the illness experience of CFS. The struggling self articulated the negative effects to self and personhood associated with CFS, defined as the violation of self, and the consequent efforts of participants to manage symptoms and decrease their violation by use of what was termed the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The struggling self occurred within a climate of threats, and it was these threats which provided the catalyst for violation and the responses. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.
慢性疲劳综合征(CFS)是一种存在争议的病症,引发了怀疑和争论。这个定性研究项目考察了澳大利亚慢性疲劳综合征患者的患病经历,尤其是他们的自我体验。运用扎根理论方法,阐述了与慢性疲劳综合征相关的自我更新和适应过程的理论。这些叙述来自对19名成年人的半结构化访谈,其中包括3名已从慢性疲劳综合征中康复的人。分析得出了挣扎着寻求更新的自我的叙述,这定义了慢性疲劳综合征的患病经历。挣扎着的自我阐述了与慢性疲劳综合征相关的对自我和人格的负面影响,定义为自我侵犯,以及参与者通过所谓的“守护者反应”和“重构反应”来管理症状并减少侵犯的相应努力。“守护者反应”提供保护和自我恢复。“重构反应”促进自我更新和意义。挣扎着的自我出现在充满威胁的环境中,正是这些威胁促成了侵犯以及相应反应。在不同条件下,侵犯、守护或重构的相对强度会发生波动,正是这些波动让参与者面临慢性疲劳综合征的持续斗争。