CREATING MS-CENTRED PELVIC-HEALTH PHYSIOTHERAPY: PART-1: 'I DON'T EVEN KNOW HOW THAT WOULD WORK...' EXPLORING PELVIC-FLOOR-DYSFUNCTION WITH WOMEN WITH MS

C. Addington¹, A. Bradshaw², S. Hagen³, D. McClurg³

¹Glasgow Caledonian University, Department of Physiotherapy and Paramedicine, Glasgow, United Kingdom, ²Kings College London, Faculty of Nursing, Midwifery & Palliative Care, London, United Kingdom, ³Glasgow Caledonian University, Health Services Research in the School of Health and Life Sciences, Glasgow, United Kingdom

Background: In the UK 95,650 women have multiple sclerosis (WwMS) (3x more than the number of men). Pelvic floor dysfunction (PFD) predominantly effects the female population. For WwMS, the compounding effects of gender and disability bias, coupled with reduced neural control of the pelvic floor muscles, means that they are more likely to experience greater complexity and prevalence of PFD symptoms but are less likely to receive treatment. Despite evidenced benefits of physiotherapy for PFD in WwMS, unlike the clear guidelines for supporting women without neurogenic conditions there is limited guidance for physiotherapists wishing to support WwMS.

Purpose: Current research on how PFD is experienced by WwMS and how they may be best supported (physiotherapeutically) in managing these symptoms is limited. Failure of research to consider the patient and their perspectives can results in inappropriate physio-therapeutic interventions and recommendations. This project will be the first in the UK to explore with WwMS, their experience of symptoms of PFD and management. These insights will be the first step in helping to shape physio-therapeutic intervention, clinical guidelines, and policy for WwMS and PFD.

Methods: Situated within a participatory research methodology, the experiences of pelvic-health physiotherapy for PFD were explored with WwMS through an intersectional, feminist lens. 11 WwMS living in the UK took part in this online study. A focus group with four of the participants co-produced a semi-structured interview script which centred on what to ask to better understand the experience of PFD and MS. Questions included the impact PFD and MS on aspects of quality of life, access to pelvic-health physiotherapy; how physiotherapy could assist with PFD and the challenges physiotherapy presents. These questions were then explored during one-to-one interviews with 7 WwMS. Using the framework method, interview transcripts were thematically analysed, with the interview guide acting as the initially coding frame. After several iterations, themes emerged from inductive interpretation. An MS involvement group provided feedback on these themes at a MS diversity event held in London.

Results: Six themes emerged: disruption and uncertainty, health-paradox, dismissal and stigmatisation, relentless self-advocacy, understanding MS and collective identities. To implement these themes into an action plan, these themes were situated within two domains of healthcare need:
1. Creation of holistic, MS-centred pelvic-health physiotherapy.
2. Increase awareness & access to pelvic-health physiotherapy.

Conclusions: The findings highlight the relentless advocacy for access to healthcare services that the WwMS of this project want and need. Specific to pelvic-health physiotherapy there was lack of awareness on what it involves, why it is important, and how it can (and rather if it can) help with symptoms associated with PFD. Among the group there was a resounding opinion that physio-therapeutic treatment, services and professionals needs to be MS informed, and provide preventive approaches and lifelong wellbeing.

Implications: These insights may help inform the design of clinical treatment protocols which can be empirically evaluated, leading to physio-therapeutic patient-centred, evidenced based, treatments. Specific to this projects’ development the researchers will explore the potential ways of embedding the identified healthcare needs into actionable outcome for physiotherapy practice.

Funding acknowledgements: No funding was arranged for this doctorate in physiotherapy project.

Keywords:
Participatory research
Pelvic health

Topics:
Pelvic, sexual and reproductive health
Neurology: multiple sclerosis
Research methodology, knowledge translation & implementation science

Did this work require ethics approval? Yes

Institution: Glasgow Caledonian University

Committee: Health and Life Sciences Ethics, Nursing and Community Health Committee

Ethics number: HLS/PSWAHS/20/028)