Exploring people's stories of psychologically informed vulvodynia care
Research type
Research Study
Full title
A narrative analysis exploring people living with vulvodynia's journey through psychologically-informed services and how this shapes their understanding of the diagnosis
IRAS ID
347272
Contact name
Anna Olsen
Contact email
Sponsor organisation
Canterbury Christ Church University
Duration of Study in the UK
1 years, 1 months, 28 days
Research summary
Vulvodynia is a primary pain condition that affects the female external genitalia. Literature suggests that vulvodynia may affect up to 16% of women in their lifetime (Harlow & Stewart, 2003). Implications of living with vulvodynia include negative body image, stigma, mistrust and isolation as well as difficulties with emotion regulation and romantic relationships (Niedenfueher et al., 2023). In addition, it is associated with higher levels of anxiety and depression (Ferraz et al., 2023).
Given these psychosocial barriers and evidence that psychosocial factors are associated with pain (Chisari et al., 2020), there is a role for clinical psychologists to provide interventions and inform care. This in line with guidelines from the British Society for the Study of Vulval Diseases Guideline Group who encourage a combination of treatments and the involvement of multiple health professionals (Mandal et al., 2010). However, there is currently no qualitative research exploring women's accounts of psychologically-informed care within the UK.
This study will explore women’s stories of their journey through psychologically-informed care which will be analysed using qualitative methodology. In order to take part, women over the age of 18 must have received a formal diagnosis (can be currently living with the diagnosis or have experienced it in the past). Participants must have received a psychologically informed intervention approach to care. Interviews will take part online and last between 60 and 90 minutes.
Lay summary of study results:The study recruited 11 individuals who accessed psychologically informed support related to a current or historic diagnosis.
Participants were recruited through social media or following an NHS psychologically informed vulval pain group. They were interviewed using a narrative approach to explore people’s stories of their care. The interviews were analysed using a combination of narrative analysis techniques which explore what and how people narrate these stories.
The majority of stories detailed a ‘struggle’ plot, navigating difficult experiences, isolation and fighting for support. However, growth by ‘rewriting’ stories was evident and ‘communion’ through their attendance to a NHS psychologically informed group. Narrative processes emerged including using rhetorical questions, informative approaches and the voices of others to narrate their stories. Psychological support experiences acted as a means of ‘navigating’ the journey, counteracting power imbalance and creating a shared understanding of pain. The findings illustrate the significance of relational connection in isolating experiences of a journey through psychologically informed care, demonstrating how narrative practices can produce alternative forms of knowledge in pain contexts.
Themes of uncertainty among the data both in how and what was told as well as a search to make meaning from their experience appeared. Thus, speaking about their story may have been therapeutic, with one participant reporting it was ‘nice to see my own words reflected at me’ when they were sent a narrative summary. Additionally, the principal investigator has personal experience of vulvodynia and found therapeutic, particularly when hearing the positive’s emerging from narratives as the research field is understandably dominated by negative experiences.
They aim to publish this study in the Journal of Sexual Medicine or Qualitative Health Research. These journals have published other qualitative studies exploring experiences of people with vulvodynia. The principal investigator has also been invited to present the results to Kingston & Richmond NHS Foundation Trust which supported with study recruitment.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
25/EM/0052
Date of REC Opinion
16 May 2025
REC opinion
Further Information Favourable Opinion