'There's Nothing Wrong With You; You Just Need to Lose Weight'-A Qualitative Exploration of Pelvic Floor Dysfunction Among Women With Multiple Sclerosis and Their Interaction in Seeking Pelvic Healthcare.

Publisher: Wiley Country of Publication: England NLM ID: 9815926 Publication Model: Print Cited Medium: Internet ISSN: 1369-7625 (Electronic) Linking ISSN: 13696513 NLM ISO Abbreviation: Health Expect Subsets: MEDLINE

Original Publication: Oxford, UK : Wiley, c1998-

Multiple Sclerosis*/psychology ; Multiple Sclerosis*/therapy ; Qualitative Research* ; Focus Groups*; Humans ; Female ; Middle Aged ; United Kingdom ; Adult ; Pelvic Floor Disorders/psychology ; Pelvic Floor Disorders/therapy ; Interviews as Topic ; Patient Acceptance of Health Care/psychology ; Social Stigma

Introduction: Within 10 years of multiple sclerosis (MS) progression, nearly all women will have experienced symptoms associated with bladder, bowel and/or sexual health. Yet despite the impact these symptoms have on physical, psychological and social well-being, it remains an underserved area within the UK healthcare system.
Study Aim: This research employs a participatory research approach framed within the principles of intersectional feminism to collaboratively investigate the lived experiences of pelvic floor dysfunction (PFD) and healthcare interactions among UK-based women with MS.
Setting and Participants: Women residing in the United Kingdom with MS were invited to participate in online interviews facilitated by the primary author.
Analysis: A thematic framework analysis offering a structured yet adaptable approach to data collection and interpretation.
Results: One focus group involving four women with MS and seven individual, one-to-one interviews with women with MS provided insights into the challenges associated with navigating both MS and PFD. Four main themes included: Navigating MS and PFD; Cycles of Control; Mind, Mobility and Bladder Embodiment; Silenced Voices: The Impact of Taboos/Stigma/Dismissal on Preventing Access and Resistance through Collective Community. Six subthemes were also identified. Taken together, these themes cumulatively reflect PFD as an unmet healthcare need.
Conclusion: Our findings underscore negative healthcare experiences, inadequate information provision and unmet needs related to PFD, emphasising the compounding effects of gender and disability biases.
Impact: We hope that these insights can lay the groundwork for developing tailored therapeutic interventions and improved PFD healthcare for women with MS. Potential solutions include using existing MS support communities.
Public Contributions: Women with MS were actively involved in co-producing interview scripts for one-to-one interviews. The primary author shared study findings at an MS group event, engaging in discussions with over 30 individuals, including people with MS and their loved ones. MS advocates played a pivotal role in contextualising the study within the broader lived experience of MS.
(© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

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The authors received no specific funding for this work.

Keywords: intersectional feminism; multiple sclerosis; participatory research; pelvic floor dysfunction; qualitative methods

Date Created: 20240716 Date Completed: 20240716 Latest Revision: 20240718

20240718

PMC11249810

10.1111/hex.14152

39010636