Department of Physiotherapy and Paramedicine, Glasgow Caledonian University, Glasgow, UK.
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Health Expect. 2024 Aug;27(4):e14152. doi: 10.1111/hex.14152.
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.
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.
Women residing in the United Kingdom with MS were invited to participate in online interviews facilitated by the primary author.
A thematic framework analysis offering a structured yet adaptable approach to data collection and interpretation.
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.
Our findings underscore negative healthcare experiences, inadequate information provision and unmet needs related to PFD, emphasising the compounding effects of gender and disability biases.
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.
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.
多发性硬化症(MS)进展 10 年内,几乎所有女性都会经历与膀胱、肠道和/或性健康相关的症状。尽管这些症状对身体、心理和社会健康都有影响,但在英国医疗保健系统中,这仍然是一个服务不足的领域。
本研究采用参与式研究方法,以交叉女权主义原则为框架,共同研究英国多发性硬化症女性的盆底功能障碍(PFD)和医疗保健互动的生活体验。
邀请居住在英国的多发性硬化症女性参与由主要作者主持的在线访谈。
提供一种主题框架分析,为数据收集和解释提供结构化但灵活的方法。
一个由四名多发性硬化症女性组成的焦点小组和七名多发性硬化症女性的一对一访谈提供了有关在 MS 和 PFD 之间进行导航的挑战的见解。四个主要主题包括:在 MS 和 PFD 之间进行导航;控制周期;心理、移动性和膀胱体现;沉默的声音:禁忌/耻辱/忽视对预防访问和通过集体社区进行抵制的影响。还确定了六个子主题。总的来说,这些主题共同反映了 PFD 是一个未满足的医疗保健需求。
我们的研究结果突显了与 PFD 相关的负面医疗体验、信息提供不足和未满足的需求,强调了性别和残疾偏见的综合影响。
我们希望这些见解可以为为多发性硬化症女性制定量身定制的治疗干预措施和改善 PFD 医疗保健奠定基础。潜在的解决方案包括利用现有的多发性硬化症支持社区。
多发性硬化症女性积极参与共同制定一对一访谈的访谈脚本。主要作者在多发性硬化症小组活动中分享了研究结果,与 30 多人进行了讨论,包括多发性硬化症患者及其亲人。多发性硬化症倡导者在将研究置于更广泛的多发性硬化症生活体验背景下发挥了关键作用。