Urinary incontinence (UI) is the involuntary loss of urine; it is a symptom and a sign that something is wrong (Haylen et al, 2010). Symptoms of UI include any deviation from the normal structure, function or sensation of the lower urinary tract that a woman experiences or that is observed by her family or caregivers (Haylen et al, 2010). It is a common condition among women, as 25% of adult women have a type of UI to some degree, and prevalence increases with age (Hannestad et al, 2002). Despite this, most women with UI do not seek care and treatment (Hannestad et al, 2002; Andersson et al, 2005; Waetjen et al, 2018). Women without daily problems are more likely to report that they did not want treatment than those with more troublesome UI (Andersson et al, 2005). Little is known about why so many women live with this condition without seeking help.
Previous research has addressed women's perspectives on seeking help for UI (Pintos-Díaz et al, 2019). To the authors' knowledge, there are no studies on women's experience of assessment for UI. Although Pintos-Díaz et al's (2019) study does not address women's experience of being assessed, its results illustrate their experience of feeling distress, shame, uncertainty and guilt related to their incontinence. It can be assumed that many women who are referred for incontinence assessment have long been reluctant to seek such a referral.
The aim of this study was to explore the experiences of women who have been through an assessment for UI by a urotherapist to gain deeper insight into this area.
Method
Design
A qualitative exploratory design with semi-structured, in-depth interviews was chosen. The interview guide was established in accordance with Kallio et al (2016). This study complies with the consolidated criteria for reporting qualitative research checklist (COREQ) (Tong et al, 2007).
Setting
All participants had been referred to a gynaecological outpatient clinic by a physician for a UI assessment. The waiting time from referral to assessment was 6–12 months. The assessment was carried out by an experienced urotherapist, who is a nurse specialist in lower urinary tract dysfunction (a specific qualification is required for this role in Norway).
An incontinence assessment is a standardised procedure for investigating UI so treatment can be decided upon (Svenningsen et al, 2021). Before a consultation, women are asked to complete a two-page questionnaire (Kulseng-Hanssen and Borstad, 2003) and a 24-hour drinking-and-voiding chart with a 24-hour pad test.
The consultation lasts 60 minutes. First, the urotherapist goes through the medical history, the questionnaire and the voiding chart with the patient. Then, when the patient has a comfortably full bladder (Haylen et al, 2010), uroflowmetry is performed. The patient voids on a toilet chair that records the volume and speed of the urine flow in ml. A uroflowmetry gives an idea of the emptying capacity of the bladder.
The examination continues with the patient in a dorsal lithotomy position. The urotherapist observes signs of urogenital prolapse (descent of the vaginal walls and/or the uterus) and tests perineal sensibility, anocutaneous reflex and pelvic floor muscle strength. It is important to include all these physical and neurological components in the UI assessment.
The patient is then catheterised with a single-use catheter to assess the emptying ability of the bladder. The urine is examined with a dipstick and, if necessary, sent for culture. After the bladder has been drained of any urine, 300 ml normal saline (NaCl 9 mg/ml) is inserted through the same catheter. The patient is observed for any sign of distress during the bladder filling. She is then asked to cough. This action indicates whether there is any urethral hypermobility, and any cough-synchronous leakage observed proves the presence of stress urinary incontinence (Diaz et al, 2017). Then a standardised stress test is performed. During a this, the patient coughs three times and completes 20 jumping jacks with 300 ml in the bladder while wearing a pre-weighed pad (Berild and Kulseng-Hanssen, 2012).
Participants and sampling strategies
The study group consisted of 10 women with UI who had just undergone a UI assessment in the Vestfold Hospital Trust outpatient clinic. They were recruited by the urotherapist immediately after the assessment. Inclusion criteria were as follows: women aged >18 years who were competent to give consent, able to speak and understand Norwegian and had not previously attended an assessment for UI. The study period was over September and October 2022. The women were given verbal and written information about the study.
If they met the inclusion criteria, agreed to participate and signed the declaration of consent, they were included in the research project. The women were then contacted by the first author by phone to make an appointment for an interview. Interviews were scheduled over the following few weeks at a time and place chosen by the participant; they took place at the outpatient clinic and lasted approximately 45 minutes each. They were audio-recorded and transcribed verbatim by the first author as soon as possible after the interviews. Transcribing the interviews gave the first author deeper insight into the data (Polit and Beck, 2017). None of the women withdrew from the study.
Data analysis
A thematic analysis in six phases was performed using the strategy set out by Braun and Clarke (2022). Thematic analysis is a method for identifying, analysing and reporting patterns (themes) in data.
Each interview was analysed by the first and second authors. The first step consisted of reading the transcribed interviews several times and noting initial ideas along the way. In step two, representative issues across the entire data set were identified, tested and coded systematically. Data relevant to each code were collected.
In the third step, codes were grouped by theme. Step four consisted of examining whether the themes worked in relation to the coded excerpts and the entire data set.
Step five involved producing a thematic map of the analysis. The sixth step involved the selection of vivid, compelling excerpt examples and a final analysis of the selected excerpts, and linking the analysis to the research question and literature to produce a scientific report.
The outcome was the identification of themes representing the women's experience of undergoing a UI examination led by a urotherapist. Nvivo software (March 2020 release) was used to classify, categorise and organise the data, and Microsoft Word was used to create a matrix in which to organise the results, excerpts, preliminary codes and themes.
Ethics
All procedures were carried out in accordance with the Helsinki Declaration. The Regional Committee for Medical and Health Research Ethics in South East Norway said formal approval was not required.
The project was approved by the Norwegian Agency for Shared Services in Education and Research, which is the data protection provider for Western Norway University of Applied Sciences (approval no 805218), and a cooperation agreement between it and the hospital trust was made to ensure that data were stored in accordance with guidelines for the secure and proper storage of research data.
Project participants gave their written consent to participate. All data were self-reported. No medical information was collected from patient records.
Findings
Upon analysis, three themes were identified that described the women's experience of the UI assessment: a lot of shame and worry related to UI and the assessment; the importance of experiencing a safe relationship with the urotherapist; and the assessment giving hope for a better life in the future.
Theme 1. A lot of shame and worry related to UI and the assessment
None of the participants had a clear idea of what an incontinence assessment involved before the assessment. None said they had received information from the referring doctor, and the appointment letter from the hospital contained little information.
All of the women said that they had been experiencing incontinence for a long time; this period was between 18 months and >30 years. Their concern before the incontinence assessment became evident in different ways: fear that the problem would not be serious enough to get help; fear that the investigation would be cancelled if the forms were not completed correctly; and fear that nothing could be done to address or solve the issue.
Several stated that the long waiting time for the assessment gave them the feeling that their problem was not important enough to be prioritised by the hospital.
One had been experiencing urine leakage since her first delivery more than 30 years before. Her GP had offered her nothing but information about pelvic floor exercises. Many of the participants had been modifying their habits and routines for years before seeking help. This had negative effects on their daily life. For example, they avoided leaving their house, did not play with their children or grandchildren and had stopped activities that might cause leakage. Several participants said they were always on the lookout for a toilet and were ashamed of having such a problem.
Table 1 displays the participants' narratives on this theme.
Table 1. Narratives related to theme 1
| Theme | Sub-themes | Codes |
|---|---|---|
| A lot of shame and worry related to urinary incontinence and the assessment | Worry about preparation for the examination | ‘I got a lot of forms to fill out and I couldn't do that.’ Participant 1‘The preparatory tasks were so extensive and time consuming.’ Participant 6‘Registering voiding and weighing incontinence pads is a lot of work, especially at night. I didn't like it much.’ Participant 7‘When I received the letter with the tasks to be done in advance of the assessment, I was discouraged. That pee list I was going to fill out—I didn't like it, it was terrible.’ Participant 6‘I was afraid that I would be sent home again if I hadn't done what I was supposed to when I came for assessment.’ Participant 4 |
| Incontinence is a shameful and embarrassing problem | ‘This is so intimate, disgusting and embarrassing. I don't want to talk about it.’ Participant 4‘I haven't spoken to anyone about this before… I think it's a very embarrassing problem.’ Participant 8 | |
| Worry associated with the problem being unimportant and not prioritised in the healthcare system | ‘I had my appointment postponed and, when I called in and asked for a new date, I kind of felt like my problem, yes, I felt embarrassed that I was getting feedback that my problem was not prioritised and that there was a long wait. Did they have more important things to deal with?’ Participant 4‘It has been a long waiting time; I have waited for an incontinence assessment for more than a year and was very happy that I finally got an appointment.’ Participant 9 |
Theme 2. The importance of experiencing a safe relationship with the urotherapist
Regarding factors that were important in women's perception of the incontinence assessment, the relationship with the urotherapist received particular attention. All participants acknowledged that what was most important, besides getting help for their UI, was their contact with the urotherapist. The data from the interviews give the general impression that it is the urotherapist's behaviour—how she meets, listens to and responds to the women—that is most important. They all indicated that it was important to them that the urotherapist was friendly. Adjectives that recurred in the description of the urotherapist were ‘pleasant’, ‘friendly’, ‘clever’, ‘clear’, ‘calm’, ‘knowledgeable’ and ‘confident’.
Sixty minutes were allotted for each assessment. None of the interviewees felt there was a lack of time. The women felt well taken care of and that they were in the right place for their problem. In common to all participants was how happy they were that the conversation with the urotherapist focused on their UI and the examination they were going through.
All said that their UI was a problem they did not talk to others about. It was therefore important that the urotherapist seemed professional, knowledgeable and confident. The women expressed gratitude about meeting a urotherapist who listened and responded. It was valuable to meet a health professional who acknowledged their problems and assured them that these were real and that treatment options were available.
Table 2 shows the participants' narratives on this theme.
Table 2. Narratives related to theme 2
| Theme | Sub-themes | Codes |
|---|---|---|
| The importance of experiencing a safe relationship with the urotherapist | The importance of being met and taken seriously | ‘The contact between the urotherapist and me was good. She was very clever—I told her too. She told me everything she was about to do; she was calm, and I understood that the examination was safe and properly conducted.’ Participant 3‘I felt very belittled, but the urotherapist was very clever and made me feel very well looked after and safe.’ Participant 8‘What mattered most was how the urotherapist met me. I understand it's a job for her, but she really took me seriously and explained everything she did. I was met in a really good way and that was especially important to me.’ Participant 9‘It was easy to open up about my challenges. She met me with knowledge and understanding. I felt confident that I was in the right place for my problem.’ Participant 10 |
Theme 3. The assessment giving hope for a better life in the future
The third theme that emerged was that the assessment gave hope for a better life in the future. The women's UI had reached a point where they needed help to manage it.
Most of the women expressed hope that the incontinence assessment would lead to some form of treatment. They generally had little knowledge about the management options available for their UI.
During the appointment, each woman was given information about the normal function of the lower urinary tract and how her system was affected. Treatment options for specific problems were explained. This knowledge helped the women to understand the causes of their incontinence and why the different treatments were suggested.
Many of the women said that information about UI and treatment options should be more easily available. If they had known before what they knew now, they might have asked for help sooner. Information about specific interventions gave them hope for improvement.
Table 3 shows the participants' narratives on this theme.
Table 3. Narratives related to theme 3: the assessment giving them hope for a better life in the future
| Theme | Sub-themes | Codes |
|---|---|---|
| The assessment gave hope for a better life in the future | Knowledge about causes and treatment options was needed | ‘The incontinence assessment means I now feel like I know a lot more about my problem.’ Participant 2‘There is a need for more information about incontinence assessment and that help is available. A lot of women should be informed about the treatment of urine leakage.’ Participant 9 |
| The women hoped to get help | ‘I hope and believe this incontinence assessment can help.’ Participant 1‘The most important factor of the assessment was to get help. I was terrified that I wouldn't get help and that the urinary incontinence was something I had to live with. The urotherapist reassured me that help was available.’ Participant 5‘I hope the incontinence assessment can help me get help.’ Participant 10 | |
| Hope for a better life | ‘I'm a candidate for surgery and I'm pretty sure that an operation that keeps me from leaking urine any more will make my life a lot better.’ Participant 8 |
Discussion
The first theme identified in this study was that the women undergoing UI assessments had experienced a lot of shame for many years before seeking help. This was related to having the condition and all the limitations and challenges it imposed on their lifestyle. They said they felt reluctant to seek help because of the shame, and worried whether their condition was serious enough to be prioritised by the healthcare system.
Anger et al (2011) found women felt they could not talk about UI, so those who experienced it might display apathy or even deny they have a problem. Pintos-Díaz et al (2019) also described the feelings of distress, shame, insecurity and guilt that women with UI experience when seeking care at a UI centre for the first time.
The concept of shame has not been scientifically explored in depth but is described by Parse (2010) as ‘the explicit–tacit knowing of dishonour, the nonbeing with a deep sense of not conforming to valued personal expectations and expectations of others’. The attributes of shame can be ‘covering’ and ‘negative self-evaluation’ (Chilton, 2012). Although the sense of shame related to UI seems evident, previous research in this area is lacking. To help reduce the shame that surrounds UI, health professionals need to become better at informing both individuals and society in general.
The first theme also revealed that the women experienced a lot of worry before the assessment, as they had little or no knowledge about what an incontinence assessment entailed. They found the written information they received in advance confusing and inadequate, and stated that difficulties in completing the forms before the appointment made them anxious. Several were also concerned that help might not be available for their problem.
There may be several reasons for these concerns. According to Norheim and Vinsnes (2005), many women do not seek help for their incontinence or wait many years before doing so, and one reason for this may be that they fear surgical treatment.
Sensoy et al (2013) found women's reasons for not seeking medical care were related to advanced age, feeling humiliated about being examined, having no time for a medical examination and having no discomfort from the UI. In general, these women did not consider their UI condition to be a life-threatening problem and did not have information about treatment available (Sensoy et al, 2013).
The women in the present study indicated that they perceived the waiting time from referral to assessment to be very long. This may add to a feeling of not being important and may generate more worry. Given that the results from Hunskaar and Vinsnes (1991) indicate that women may experience serious consequences from UI regarding their psychological wellbeing, perception of health and social life, it seems clear that those in the present study could have benefited from better information and guidance. With regard to prevalence and psychosocial burden, health personnel must improve the dissemination of information about UI to educate women in general and limit the psychosocial burden.
The second theme identified was that the experience of a safe relationship with the urotherapist was of great importance to women undergoing a UI assessment. The participants indicated that they had finally met a health professional who understood them, listened and responded to their problem. They said that leaking urine was shameful and that the information they shared with their GP, other health personnel and friends was limited. Therefore, they greatly valued being met by a safe, professional and caring urotherapist who acknowledged their problems and fears. It is, after all, nurses' ‘basic responsibility to accept others without judgment, including self-acceptance’ (Chilton, 2012). Their experience is supported by the findings in Litherland and Gjersøe's (2010) study, in which many patients reported that they appreciated seeing a urotherapist who had time for each individual, meaning that they felt that they were met, heard and taken seriously (Litherland and Gjersøe, 2010). Most women with UI would recommend a specialist continence nurse treatment to a friend (Festen et al, 2008).
One of the participants in this study appreciated that the urotherapist was female as that made it easier to discuss her ‘intimate, disgusting, embarrassing problem’. A male nurse or doctor was not an option for her. Litherland and Gjersøe (2010) also reported that many of the patients in their study expressed relief at seeing a woman when it came to UI problems. The authors of the present study believe this may be because a female urotherapist may have a greater understanding of and a better way of dealing with such problems.
A recent Norwegian government report (Ministry of Health and Welfare, 2023) on women's health raised the question of whether a woman's disease with low status combined with little knowledge within the health services imposes a particular burden. The results of the present study show that women have little knowledge of the assessment and treatment options for UI. This lack of awareness, both within health services and among women with UI, makes it pertinent to improve knowledge in this field. Health professionals should concentrate their efforts on improving awareness of this problem among women. They must assure them that this is not a condition of humiliation and taboo, while providing appropriate medical care, suggestions for simple lifestyle changes and psychosocial support (Sensoy et al, 2013).
The third theme—that the UI assessment gave hope for a better life in the future—reflects how, immediately after the examination, the women in this study were given information on what the urotherapist had found and what might be the cause of their UI. In addition to giving general advice on drinking and toilet habits, the urotherapist informed each woman about her specific problem and treatment options and made a follow-up plan. As a result, the women expressed hope for improvements in daily functioning and a better life. These findings correspond with the findings of Festen et al (2008), which showed that women with incontinence who were treated by nurses who specialised in this clinical area experienced improvements in quality of life.
This findings of the present study also indicate that information about UI assessment and treatment options should be made more easily available. For example, health professionals could introduce the topic of UI when any woman visits a primary health centre or an outpatient clinic. In connection with prescribing incontinence protection and other aids, GPs could increase women's knowledge of UI and thereby minimise negative thoughts about assessment and treatment options.
The results of this explorative study highlight what women with UI say is important during assessment. The results may inform urotherapists as to what they should focus on in their daily practice when planning and performing UI assessments. These findings may be adapted for clinical practice by urotherapists performing UI assessments. The scarcity of research in the field of women's experience of undergoing UI assessment, together with the findings of this study, make it imperative to recommend future research in this area.
Conclusions
UI affects all areas of women's lives, as they experience a lot of shame and anxiety related to living with the condition. Better information and preparation regarding UI assessment and treatment options could be implemented to reduce these. Shorter waiting times could help diminish feelings of not being important.
Urotherapists and specialist nurses who assess patients with UI should be aware of how they meet and talk to each individual. Being met by a professional, taken seriously and listened to were experienced as important, as was receiving information about treatment options for UI. By disseminating information about the condition and its prevalence, consequences, assessment and treatment options, the psychosocial burden of living with UI may be diminished and may also provide hope for a better life for these women.
KEY POINTS
- Urinary incontinence and its assessment are associated with shame and worry
- There is a lack of information about how a urinary incontinence assessment is carried out and treatment options
- The patient-urotherapist relationship is of great importance
- Information about treatment options gives hope for a better life
CPD reflective questions
- How do you care for women with urinary incontinence (UI)?
- What are the strengths and weaknesses of different types of patient information and questionnaires that can be used to investigate a woman's UI?
- Why do you think it is beneficial to have a UI assessment to be led by a nurse specialist or urotherapist?