Kralik Debbie
RDNS Research Unit, Royal District Nursing Service, Flinders University of South Australia, Glenside, Australia.
J Adv Nurs. 2002 Jul;39(2):146-54. doi: 10.1046/j.1365-2648.2000.02254.x.
This paper reports the findings of research that aimed to elucidate the meaning of midlife women's experiences of living with chronic illness.
A lack of awareness by health professionals of the context in which women must live with chronic illness often results in women feeling overwhelmed, alienated and without voice within the delivery of health care. This inquiry privileged women's voices.
The construct of 'transition' in chronic illness experience evolved from this collaborative and participatory research with midlife women living with adult onset chronic illness. Over a 1-year timeframe, 81 women were asked to tell their stories of living with a chronic illness. These correspondence data were thematically analysed to provide storied accounts. Guided by feminist principles, women were empowered through research processes and have actively participated in the development of the transition construct.
The research revealed that when women are first confronted with a chronic illness they appear to move through a complex trajectory that involves an 'extraordinary' phase of turmoil and distress; however, they may then make the transition toward an 'ordinary' phase that involves incorporating chronic illness into their lives. Transitions in chronic illness experience involve movement from extraordinariness to ordinariness and sometimes back again and were found to be processes that are nonlinear, sometimes cyclical and potentially recurring throughout a woman's life. Four major constructs emerged from women's narratives: How quickly life changes; extraordinariness: confronting life with illness; The illness experience as transforming and ordinariness: reconstructing life with illness.
Nurses are in a position where they may make a difference to women who live with chronic illness. Understanding illness transitions offers a framework that will enable nurses to move beyond the bio-medically orientated concepts of nursing practice, towards a holistic approach to the provision of nursing care.
本文报告了一项旨在阐明中年女性慢性病生活经历意义的研究结果。
医护人员对女性慢性病生活背景缺乏认识,往往导致女性在医疗保健过程中感到不堪重负、被疏远且无法发声。这项研究重视女性的声音。
慢性病经历中的“转变”概念源于与患有成年期慢性病的中年女性进行的这项合作性参与式研究。在一年的时间里,81名女性被要求讲述她们的慢性病生活故事。对这些通信数据进行了主题分析,以提供故事性描述。在女权主义原则的指导下,女性通过研究过程获得了力量,并积极参与了转变概念的发展。
研究表明,当女性首次面对慢性病时,她们似乎会经历一个复杂的轨迹,其中包括一个动荡和痛苦的“非凡”阶段;然而,她们随后可能会转向一个“普通”阶段,即将慢性病融入自己的生活。慢性病经历中的转变包括从非凡到普通,有时又回到非凡,并且被发现是一个非线性的、有时是循环的且可能在女性一生中反复出现的过程。女性叙述中出现了四个主要概念:生活变化有多快;非凡:带病面对生活;疾病经历的转变和普通:带病重建生活。
护士有能力对患有慢性病的女性产生影响。理解疾病转变提供了一个框架,使护士能够超越以生物医学为导向的护理实践概念,转向提供整体护理的方法。