Between anxiety and hope: the experiences of women with vulval intraepithelial neoplasia during their illness trajectory - a qualitative approach

The vulvar intraepithelial neoplasia (VIN) is a rare chronic skin condition that may progress to an invasive carcinoma of the vulva. Major issues affecting women's health were occurring symptoms, negative influences on sexuality, uncertainty concerning the illness progression and changes in the body image. Despite this, there is little known about the lived experiences of the illness trajectory. Therefore, the aim of this study was to describe the experiences of women with VIN during the illness trajectory. In a secondary data analysis of the foregoing qualitative study we analysed eight narrative interviews with women with VIN by using thematic analysis in combination with critical hermeneutics. Central for these women during their course of illness was a sense of "Hope and Fear". This constitutive pattern reflects the fear of recurrence but also the trust in healing. The eight narratives showed women's experiences during their course of illness occurred in five phases: "there is something unknown"; "one knows, what IT is"; "IT is treated and should heal"; "IT has effects on daily life"; "meanwhile it works". Women's experiences were particularly influenced by the feeling of "embarrassment" and by "dealing with professionals". Current care seems to lack adequate support for women with VIN to manage these phases. We suggest, based on our study and the international literature, that new models of counselling and providing information need to be developed and evaluated.