The women interviewed ranged in age from 30-74 years. The presence of self-rated severe symptoms was slightly more frequent in the interview group compared to the complete trial, and moderate symptoms were less frequent (see Table 1). The women interviewed were similar to those in the whole clinical trial in terms of age range, diversity of ethnicity, partnership status/living situation and employment status. Three women lived alone.
Embarrassment was woven throughout women's accounts of urinary incontinence and how they sought health care for the problem. We therefore start by exploring this emergent theme, examining how the women talked about their embarrassment. We then examine the data in relation to the issues specifically asked about in the interview, although embarrassment remains a strong theme throughout.
All the women interviewed talked about embarrassment related to urinary incontinence, although how they talked about it varied. Women talked about the embarrassment of having the problem: 'I do not want anyone else to know ... that I have got this problem' (C1), 'it's not the sort of thing you broadcast' (A7). Women had stories of situations where they had been very embarrassed by being 'wet' through their incontinence. These included when at work, particularly among male colleagues, and at social events. Several women talked about their fear of smelling, one woman commenting 'if I can smell then everyone else can smell me' (B4), and another talking about her experience of others:
waterworks is an embarrassing problem ... someone walks past you and they smell so bad, and you know they've got that problem... they're that used to the smell they don't even notice...ladies and men that smell a lot its horrendous (A11).
Others were less alarmed by their incontinence although still embarrassed. One woman described it as 'part of women's problems but still not something to talk about' (A1) and another said 'its not a dying problem ... its still personal' (A12).
All the women, except one, expressed feeling embarrassed talking to others about incontinence and discussed this in a variety of ways. Fourteen women spontaneously described urinary incontinence in terms of a taboo subject, something to be kept private, but there was diversity of how they coped with this prior to attending the treatment sessions. A few women admitted they had not mentioned the incontinence to anyone, even close family (E1, A13). Others did not mention whether they had discussed the issue before seeking health care. One woman felt able to talk to women friends who, like her, had recently had a baby (A5) and others had talked to family, friends and colleagues. Women also talked about their embarrassment on going to see a health professional about urinary incontinence. The one woman who said she was not embarrassed said 'We all pee and you know some of us have problems' (A6). This woman explained that her preference for one to one treatment was based on her experience of having psychiatric treatment where she built up a rapport with the therapist.
Expectations and concerns about groups sessions before attending
All the women expressed uncertainty about what would happen in the group sessions and many were anxious about the sessions. For some the anxiety was mostly because of embarrassment and it becoming known that they suffered urinary incontinence 'you know they know what you are there for so it is not a private problem anymore' (C1). Several women admitted working out exit strategies if they found it too uncomfortable. Others talked about anxiety in relation to their uncertainty of what to expect 'I could not imagine how they would do it' (A8) and who would be there 'you never know who's going to be in there' (A5). Nearly half talked about specific expectations and concerns described below.
Several women described their vivid imaginings of the group sessions:
(I) had pre-conceived ideas of a workshop atmosphere, that it would be loads of little exercise mats on the floor, all lying down in positions in leotards (A5)
I thought there may be twenty five ...maybe they doing some treatment ... you have to take your clothes off or something (B3)
would we have to strip in front of one another? (A9)
One woman expected it to be like a support group where experiences were shared (A4) and another like an antenatal class, sitting in a circle chatting and less formal (B2). Several women expected the group to include women with the same problem, for example, women after childbirth (A5) or women with prolapse (B4). One woman expected the group to include women more able to express themselves than she felt she could (A8) and another felt concerned about being younger than others (B2). This sentiment was also expressed by another younger woman:
It would be nice to have people the same age in the same group I think that would have been better, you know to to have err a group of sort of like roughly the same age (C1)
Several women expected a much larger group (20-25 people was mentioned). Several women expressed concern about feeling 'judged', one describing it as being made to 'feel incompetent as well as incontinent' (A5).
The experience of the group session
Attending the first session 'was a big hurdle' (A11) for some women as they had to build up their courage to go along. Sitting in the waiting room could be an ordeal:
They called out everybody for the knee class ... and for the hand class. I though what on earth are they going to shout out for (laughs) us? (A8)
You arrive there... there's lots of people arriving they give you the big blue book. after that you're holding your big blue book. ...so you can think oh she's going in for these sessions I think some people may have been a bit embarrassed about that (A10)
However, once the group session started, women described relief. This included relief that the session was a teaching session with no requirement for individual participation, relief on realising how common their problem was among women generally and relief from feeling isolated with their problem.
I most certainly did not feel rejected. by the group, but I didn't attempt to be part of a group it was like just going along to a lecture somewhere with people that you don't know at all (A8)
She didn't force you to say you know 'what's your problem? (A5)
She... explained that the same problem (urinary incontinence)... (affects) one in four (people) ... so we didn't feel that we were weird or different, you know, it was just a normal thing (A9)
You know there is someone around you that's got the same sort of problem. I mean it helps. There were others worse than me and I learnt a lot (A11)
A sense of relief was common to all the women in some form. However, the benefits the women described from attending the group session varied from greatly beneficial to no benefit. Some women described learning from other people's questions and experiences.
...we talked about triggers and things. One woman said that every time she gets off the bus she has to nip to the ladies... And somebody said 'oh yes that's me too' (B1)
Several women would have like more interaction in the group:
there was not a great deal of interaction.... I know people do not want to talk about their personal things but we met three times and I felt that it might have helped each other if we had been able to talk about our feelings (D1)
One described gaining information they could use themselves and pass on to friends and family. Another felt she had not receiving enough personal input from the physiotherapist and another had been put off seeking answers to her own questions at the end of the session because of the presence of others. One woman felt the group was irrelevant for her problem. Women also mentioned practical issues, such as transport difficulties, child care needs and the inflexibility of timing of sessions.
Most of the women had suggestions about how the group sessions could be improved. Many of these related to reducing anxiety in relation to embarrassment and uncertainty about what would happen in the group. In addition they had comments about the size of the group and how it was conducted. Some commented they liked the lack of interaction, others would have preferred more interaction in the group. For example:
if you only had a bit a time at the beginning or a bit of time at the end to talk with each other...you might find it easier, somebody else might have...you know a better way of doing it (C2)
The women were asked by the interviewer, now you have experienced the group, would you go to a group another time or recommend going to a group? An unequivocal 'yes' was given by all but three women. Women who would recommend the group commented on how the physiotherapist had put the group at their ease.
it was fine....she (physiotherapist) was very good, very nice and she did try to make bits of it funny. When we flew into the exercises ... (she made) most of the old women chuckle (A3).
One woman said she would recommend it, but:
I'd obviously want a one-to-one if I feel I've done my exercises like they were asking me to do and then perhaps you can get looked inside and someone say your muscles are this this and this (A12)
One of the three women who did not give an unequivocal 'yes' said, before deciding another time:
I'd like to know who's going to hold them ...what kind of qualifications this person had or experience ....what sort of help they can expect really whether it will be... medication or exercise ....also what people would be there I suppose how big a group it would be (D2)
Two women said they would not recommend group sessions. One said:
not for group therapy no, I don't think I got enough out of it (A2).
The other still held a preference for one-to-one sessions but was happy with the group she attended.