ABSTRACT
"Alone with the taboo" - The social support experienced by women with vulvar neoplasia: a qualitative study Abstract. BACKGROUND: Cancer of the vulva is a gynaecological disease often with relevant impact for these women's daily life. On top of the medical complications, psychological problems might arise as well, due to the impaired quality of life and the withdrawal from social life. We do not know whether and what type of support is given to these patients. AIM: The qualitative study aimed at describing how the affected women experience the support they receive from their social environment from the time of the diagnosis to six months postoperatively. METHODS: A qualitative design was used. In a secondary analysis, 20 transcribed interviews from the WOMN-PRO study were analysed by qualitative content analysis according to Mayring. RESULTS: The findings from the study resulted in four main categories: having a serious disease shows how the patients experience the diagnosis as a shock and are confronted with questions of guilt and taboos. The category feel alone was strongly represented with features of not-speaking out, not looking at it and not-acting. Do it on your own features descriptions of the strategies the women use to get out of their loneliness. In experience help, it is shown that women who try to get in touch with their social environment usually receive support. CONCLUSIONS: Patients have a high demand for information concerning the disease and its possible impacts on their daily life as well as emotional and practical support from their families / partners and especially from health professionals. We recommend designating someone who acts throughout the whole treatment process as a mediator and a person of trust.
