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Abstract
Background
Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition.
Objectives
To understand individuals’ experiences of VLS and its impact on their lives.
Participants and methods
Semi-structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method.
Results
We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long-term condition (the amount of work involved in learning how to self-manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely).
Conclusions
Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals’ awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients’ experiences. VLS is a chronic condition and patients need to be supported in self-management. Support groups may be a source of support and information but can also be challenging when hearing others’ difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions.
Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition.
Objectives
To understand individuals’ experiences of VLS and its impact on their lives.
Participants and methods
Semi-structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method.
Results
We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long-term condition (the amount of work involved in learning how to self-manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely).
Conclusions
Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals’ awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients’ experiences. VLS is a chronic condition and patients need to be supported in self-management. Support groups may be a source of support and information but can also be challenging when hearing others’ difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions.
| Original language | English |
|---|---|
| Pages (from-to) | 909-918 |
| Number of pages | 10 |
| Journal | British Journal of Dermatology |
| Volume | 187 |
| Issue number | 6 |
| Early online date | 22 Aug 2022 |
| DOIs | |
| Publication status | E-pub ahead of print - 22 Aug 2022 |
Bibliographical note
Funding Information:We would like to thank the Economic and Social Research Council for funding this project. We would also like to thank the women who took the time to talk to us about their experiences and our lay advisory group for their time and support with this study.
Publisher Copyright:
© 2022 The Authors. British Journal of Dermatology published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists.
Fingerprint
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- 19 Citations
- 2 Article (Academic Journal)
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Attitudes Toward Proactive Topical Corticosteroid Use Among Women With Vulval Lichen Sclerosus
Rees, S., Arnold, S., Kherlopian, A. & Fischer, G., 1 Apr 2024, In: Journal of Lower Genital Tract Disease. 28, 2, p. 183-188 6 p.Research output: Contribution to journal › Article (Academic Journal) › peer-review
Open AccessFile1 Citation (Scopus) -
Vulval lichen sclerosus in primary care: Thinking beyond thrush and genitourinary symptoms of the menopause
Rees, S., Owen, C., Baumhauer, C. & Hillman, S., 1 May 2023, In: British Journal of General Practice. 73, 730, p. 234-236 3 p.Research output: Contribution to journal › Article (Academic Journal) › peer-review
1 Citation (Scopus)
Projects
- 1 Finished
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Living with vulval lichen sclerosus: A mixed methods study
Rees, S. (Principal Investigator)
30/04/22 → 28/02/23
Project: Research