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Invisibility: The Lived Experience of Women With Cancer of the Vulva

Jefferies, Hilary PhD, BSc (Hons); Clifford, Collette PhD, MS, DANS, Dip N, RN, RNT

doi: 10.1097/NCC.0b013e31823335a1

Background: 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.

Objective: 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?”

Methods: 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.

Results: 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.”

Conclusions: The impact of this invisibility is discussed as the “invisibility of understanding” and “invisibility of support.”

Implications for Practice: 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.

Author Affiliation: School of Health and Population Sciences, University of Birmingham, England (Dr Clifford). Dr Jefferies does not have any affiliations at present.

Financial support of £1500 was received from Owen Mumford, Ltd, for secretarial support in conducting this research study.

The authors have no other financial activities outside of the submitted work, such as royalties.

The authors have no conflicts of interest to disclose.

Correspondence: Hilary Jefferies, PhD, BSc (Hons), 4 Moore Close, Sutton Coldfield, West Mids, B74 4XY, England (

Accepted for publication August 14, 2011.

© 2012 Lippincott Williams & Wilkins, Inc.