Living with vulval lichen sclerosus: a qualitative interview study
Susanne Arnold1, Sheryl Fernando2, Sophie Rees1,3
1Warwick Clinical Trials Unit, University of Warwick, Gibbet Hill Road, Coventry, UK.
The British Journal of Dermatology
|July 14, 2022
Summary
Living with vulval lichen sclerosus (VLS) involves delayed diagnosis, challenges in self-management, and significant social stigma. Improving healthcare professional awareness and public education is crucial for better patient support and quality of life.
Area of Science:
- Dermatology
- Psychology
- Sociology
Background:
- Vulval lichen sclerosus (VLS) is a chronic inflammatory condition impacting anogenital skin.
- VLS significantly affects patients' quality of life and daily activities.
- Research on the lived experiences of individuals with VLS is limited.
Purpose of the Study:
- To explore the lived experiences of individuals with VLS.
- To understand the impact of VLS on daily life and well-being.
Main Methods:
- Semi-structured remote interviews were conducted with 20 women in the UK diagnosed with VLS.
- Participants were recruited through online support groups and social media.
- Data analysis employed social constructionist grounded theory and constant comparison.
Main Results:
- Three key themes emerged: 'missed opportunities' (delayed diagnosis, lack of information, poor healthcare encounters), 'learning to live with a long-term condition' (self-management challenges, daily life impact), and 'a secret life' (secrecy, stigma, isolation, loneliness).
- The study highlights unmet needs within the healthcare system for women with VLS.
- Experiences of stigma and isolation were prominent, underscoring the psychological and social burden of the condition.
Conclusions:
- Healthcare professionals require enhanced awareness and knowledge of VLS to improve diagnosis and patient interactions.
- Patients need support for self-management of this chronic condition.
- Public health initiatives are necessary to address societal stigma surrounding vulval conditions and improve attitudes towards female genital health.
