School of Health and Population Sciences, University of Birmingham, England, UK.
Cancer Nurs. 2012 Sep-Oct;35(5):382-9. doi: 10.1097/NCC.0b013e31823335a1.
This study describes an exploration of the lived experience of 13 British women with cancer of the vulva who underwent surgical treatment. A review of the literature highlighted a paucity of knowledge as many studies were conducted during the 1980s and 1990s and investigated sexual functioning only.
An interpretive phenomenological approach based on the work of Heidegger and van Manen was used to frame the study by posing the question, "What must it be like to be diagnosed with, and have surgery for a cancer of the vulva?"
The women, younger than 50 years, were identified by purposive sampling and interviewed between 6 months and 5 years after surgery. The data were analyzed using framework analysis.
The women's lived experience is described in its entirety by the concept of invisibility, characterized as something "no one can see," "heard of," and "talks about."
The impact of this invisibility is discussed as the "invisibility of understanding" and "invisibility of support."
Although many women may expect to be cured of their vulval cancer, the invisible nature of the condition and the resulting lack of understanding and support may continue for a considerable period, as every aspect of their everyday life and in their relationships may be affected. The challenge now is to raise awareness of this condition and provide greater informational and emotional support for these women.
本研究描述了对 13 名接受外阴癌手术治疗的英国女性患者的生活体验的探索。文献回顾强调了知识的匮乏，因为许多研究是在上世纪 80 年代和 90 年代进行的，仅调查了性功能。
基于海德格尔和范马南的工作，采用解释现象学方法来构建研究框架，提出了这样的问题：“被诊断为外阴癌并接受手术治疗的感觉如何？”
通过目的性抽样，确定了年龄小于 50 岁的女性患者，并在手术后 6 个月至 5 年内对其进行访谈。使用框架分析法对数据进行分析。
女性的生活体验被“不可见性”这一概念完整地描述，其特征为“无人能看见”、“无人听闻”和“无人谈论”。
讨论了这种不可见性的影响，即“理解的不可见性”和“支持的不可见性”。
尽管许多女性可能期望治愈外阴癌，但这种疾病的隐形性质以及由此导致的缺乏理解和支持可能会持续相当长的一段时间，因为她们日常生活和人际关系的方方面面都可能受到影响。现在的挑战是提高对这种疾病的认识，并为这些女性提供更多的信息和情感支持。
