6.1.3 The lived experience of cancer of the Vulva: Aloneness (128)

Hilary Jefferies, Macmillan Clinical Nurse Specialist, Ward 7, Birmingham Women's Hospital, Birmingham, United Kingdom hilary.jefferies@bwhct.nhs.uk

Abstract:

This paper reports on a phenomenological study that is exploring the lived experience of cancer of the vulva. This is a comparatively rare cancer that requires radical surgery. Whilst the physical effects of the surgery can be described, little is known about the psychological, emotional and social impact of this condition. A review of the literature showed a paucity of studies (Andersen and Hacker 1983, van de Wiel 1990, and Green et al 2004) and produced limited insights in the wider impact of this disease. The study reported here sought to identify the impact and meaning of this condition on a cohort of women who were being treated for cancer of the vulva. The study used Heidegger’s and van Manen’s interpretative phenomenological approach (van Manen 1990, Mulhall 1996). The aim was to gain an understanding of the women’s own perspective of their care and to add to the body of nursing knowledge, to inform and improve clinical nursing practice. Following ethical approval, thirteen women were identified by purposive sampling. All the women were aged less than 50 years and had all had surgery for their condition at some point between 6 months to 5 years prior to the interview. The data were analysed using Framework analysis (Ritchie and Spencer 1994). Four key concepts emerged from the data; one of which, Aloneness, will be explored here. This reflected the challenges the women faced in living with a condition that is not recognised or widely discussed in the main stream literature, a factor that impacts on the way in which these women can share their experience with family, friends and the health care professionals. Raising awareness of this very personal experience should help nurses caring for women with this problem.

Recommended reading list:

  • Andersen B. and Hacker N 1983 Psychosexual adjustment after vulval surgery, Obstet. Gynecol. 62, 457-62
  • Van Manen M. 1990 Researching Lived experience. Human science for an Action Sensitive pedagogy The Althouse press, Faculty of Education, the University of Western Ontario, Canada
  • Ritchie J Spencer L 1994 Qualitative data analysis for applied policy research, Analysing Qualitative Data, Eds: Bryman A. Burgess R.G.Pubs: Routledge, London

Source of Funding: UK – Industry

Amount in Funding: 1000

Biography:

I am the Lead Cancer Nurse/Macmillan Clinical Nurse specialist at the Birmingham Women's Hospital and was appointed in 2000.The main component of my job is clinical practice, involving the physical and psychological care of women with gynaecological cancer and their families from the time of their diagnosis and into the terminal phase. The other components are management, teaching and research. My research interests are centered on the long term consequences of treatment for gynaecological cancer, and I am focussed on improving the patients' experience.My phenomenological study on younger women with cancer of the vulva is a PhD at the University of Birmingham.