People with urinary incontinence (UI) experience different anatomical, hygienic, and psychosocial issues that negatively affect their quality of life. The first recommended strategy to improve UI symptoms is pelvic floor muscle training (PFMT) [1]. Nevertheless, different taboos regarding the pelvic floor area are still present in occidental countries. Therefore, it is fundamental to understand how people with UI experience PFMT, exploring their beliefs, preferences, barriers, and facilitators to PFMT adherence [2]. Understanding their experience better might inform health professionals working with people with UI on how to deliver PFMT to increase people’s adherence and satisfaction, ultimately impacting their quality of life. Hence, this qualitative study aimed to explore the experience of PFMT in people with UI.

A qualitative study based on semi-structured interviews. We purposefully recruited participants with a diagnosed UI who did PFMT with a physiotherapist. We included only those who experienced PFMT for at least one month in the study. No restrictions were applied to the gender or the primary cause of UI. The interview guide was structured with open questions exploring different topics related to the UI and the PFMT. Prior to the interview, participants had to compile an informed consent and informative note. Demographic data were collected before the interview (i.e., age, gender, education, job, marital status, clinical conditions, and physical activity levels). The interviews’ transcriptions were analysed with a ‘Reflexive Thematic Analysis’ (RTA) to identify a reflexed shared meaning among the dataset [3]. Two researchers read the transcripts, coded relevant extracts, and developed preliminary themes individually. Afterwards, they discussed and revised the preliminary themes with the other researchers to ensure that they reflected the participants’ experiences and perspectives.

Sixteen Italian participants (62.5% Women N=10, 37.5% Men N=6) with UI who experienced PFMT agreed to partake in the study. 
From the analysis of the interviews, four themes were generated:
1) ‘Learn to Control the Unconscious Consciously’: Participants experienced negative feelings driven by the loss of continence, which was an automatic function until then. They experienced these feelings in different private (e.g., during sex) and public (e.g., work and recreational) moments. Before PFMT, they coped with these feelings and the urine losses, adopting maladaptive adjustments during their life (i.e., drinking less, using diapers). After PFMT, participants realised how PFMT was essential to gain control of the pelvic floor again and increase their sexual serenity and psychological well-being. In particular, participants emphasised how active exercises, rather than passive approaches, raised awareness about their bodies and helped them to improve their body perception. 
2) ‘Starting PFMT, Changing Mind’: Prior to PFMT, participants acted as if the responsibility of the problem was not on themselves. They stated that the UI was caused by ageing, delivering, or surgery. After PFMT, interviewees understood that they were the main character of their care and became actively involved in that. 
3) ‘Into the unknown intimacy’: disinformation about pelvic floor exercises and anatomy was dominant, as participants felt like approaching something unknown and intimate. The UI connection to intimate and personal areas, therefore not visible, caused participants not to talk about their condition, hindering their life with a partner(s) and the possibility of accessing PFMT. In this sense, social media and people with the same condition helped them to discover and approach the PFMT. Still, participants expressed the need to raise pelvic floor awareness and access PFMT directly through the National Sanitary System. 
4) ‘The Importance of Not Being Alone in this Process’: interviewees expressed the need to be constantly guided. Participants emphasised the need for a guide with whom to build a relationship based on trust and expertise. They found this guide in their physiotherapists. Empathy, proxemics, good communication, and serenity were considered relevant aspects. Finally, the physiotherapist helped participants to restore their body confidence and harmony.

Before starting the PFMT, participants experienced negative feelings, such as frustration, embarrassment, anxiety, fear, and anger, influencing many aspects of their life and healthcare. As a result, participants refrain from referring to a health professional to treat and manage their condition. Only after the UI symptoms started to impact relevant aspects of participants’ lives profoundly, they began to seek help. In fact, the physiotherapist was not considered beforehand, as interviewees did not know that physiotherapists could play a role in this condition. Participants began the PFMT by physicians’ referral, word-of-mouth from people with similar conditions or after finding information on social media. Rarely there was direct access to PFMT through the national healthcare system, since it was a private service, which was emphasised as a barrier by the participants. In line with this, there is a need to promote health education and create a standardised care process for UI in the Italian healthcare system. During the PFMT, participants were surprised to understand that PFMT could improve their condition, increase their sexual serenity and extinguish negative feelings. Moreover, the PFMT helped participants to become actively involved in their health, empowering them. A note on PFMT is that people with UI felt more confident and satisfied practising active exercises rather than manual treatments or instrumental therapies (i.e., transcutaneous electrical nerve stimulation). Nevertheless, PFMT was not perceived as easy to perform, especially at the beginning, because participants had never consciously tried activating pelvic floor muscles. Therefore, adherence to home training was low. Consequently, the physiotherapist was perceived as fundamental to guiding them in their rehabilitation.  Moreover, the participants felt free to discuss their condition as the physiotherapists adopted an empathetic communication style. Finally, after the PFMT, participants declared to raise awareness about their bodies and help to develop a better body perception, improving their quality of life.

In the experience of PFMT in participants with UI, a relevant lack of education on the pelvic floor and PFMT for UI was a solid barrier to treatment access and management. Once PFMT started, the participants of this study reported how their quality of life drastically improved. Moreover, they highlighted how they would like PFMT to be delivered, namely, with a focus on active exercise programmes led by an empathetic and skilled physiotherapist. In light of these findings, a need for education programmes on pelvic floor health in the Italian healthcare system is looming to promote PFMT access, patients’ engagement and comfort with the treatment. To conclude, future studies might further explore these findings in more extensive samples and explore the impact of pelvic floor educative programmes adopted in national healthcare systems.

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