Introduction
Participants and methods
Design
Participants
Respondent number | Age (years) | Time since treatment in years | Cancer treatment | Type incontinence | Civil status | Work situation | Education | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Surgery | Surgery + radiotherapy | Radiotherapy | Urinary | Urinary + faecal | Married/living with partner | Partner but lives alone | Living alone no partner | Working | Retired | Unemployed | Elementary school | High school | University/college | |||
1 | 70 | 12 | X | X | X | X | X | |||||||||
2 | 59 | 1 | X | X | X | X | X | |||||||||
3 | 62 | 2 | X | X | X | X | X | |||||||||
4 | 54 | 3.5 | X | X | X | X | X | |||||||||
5 | 66 | 14 | X | X | X | X | X | |||||||||
6 | 62 | 2 | X | X | X | X | X | |||||||||
7 | 48 | 12 | X | X | X | X | X | |||||||||
8 | 82 | 1.5 | X | X | X | X | X | |||||||||
9 | 76 | 1 | X | X | X | X | X | |||||||||
10 | 75 | 0.5 | X | X | X | X | X | |||||||||
11 | 66 | 9 | X | X | X | X | X | |||||||||
12 | 71 | 5 | X | X | X | X | X | |||||||||
13 | 70 | 21 | X | X | X | X | X |
Data collection
Data analysis
Results
Category | Subcategory |
---|---|
Emotional reactions, thoughts and musings that incontinence contribute to | - Worry and fear of leakage - Feelings of exclusion and not fitting - Feelings of lack of freedom in everyday life - Gratitude to be alive and not to be the worst affected |
Adaption and strategies to maintain a good quality of life | - Practical adaptation to avoid leakage or that leakage is noted by the environment - Acceptance of their situation - Tell others about incontinence - Own responsibility to maintain a good quality of life |
Activity, pelvic floor muscle training and information | - To be active in daily life - Consequences of physical inactivity - Experiences of pelvic floor muscle training - Beliefs about pelvic floor muscle training - Desires about pelvic floor muscle training - Lack of information about incontinence and pelvic floor muscle training |
Category 1: emotional reactions, thoughts and musings that incontinence contributes to
Worry and fear of leakage
I never know when it comes, and when it comes I must have a toilet, that’s a concern. (R2).
Feelings of exclusion and not fitting in
…it was such a relief, it’s not just me that’s wrong. (R2)
Feelings of lack of freedom in everyday life
Well, it has changed a bit because I don’t feel as free as I used to. (R8)
Gratitude to be alive and not to be the worst affected
Well, I could just as well have been dead. But we should not trivialise it, because it’s really hard, after all. (R4)
Category 2: adaption and strategies to maintain a good QoL
Practical adaptation to avoid leakage or that leakage is noted by the environment
I prepare everything for it to work, and I have change of clothes with me if it would go so badly. (R3)
If I know I’m going somewhere I don’t drink a lot before. (R1)
If I’m at home and do my chores I’m always close to the toilet and can make it in time, and if an accident happens, I have the opportunity to wash myself or take a shower. (R3)
Acceptance of their situation
If you’re in the situation, you’ll adapt to it, that’s just the way it is. (R1)
Tell others about incontinence
They know about it and I think that’s great…if you say you don’t wish to attend…if you know you’ll not be able to get to a toilet in a long time, then they know why you say so. It’s not because I don’t want to be with them. (R3)
Own responsibility to maintain a good QoL
It’s only me that can change; there’s no one else that can change. (R1)
Category 3: activity, PFMT and information
To be active in daily life
When I was meant to meet my former workmates in town, I didn’t dare to go there. (R9)
… I’m single, and nowadays I would not just hook up with somebody and go to bed and say hey I’ll just take my diaper of first, one would not expose oneself to such a situation. (R4)
Yes, both to bike and ride are two things I can’t do anymore, and it’s a little sad, of course. And then, like running or going on group training, it’s no longer for me. (R4)
Consequences of physical inactivity
Not being able to perform physical exercise has a negative effect of the body…you become numb, you get tired and everything. It’s really important to keep moving. (R5)
Experiences of PFMT
I’m fully convinced that I can influence the pelvic floor muscles, although they are a bit damaged. (R4)
It’s a bit tough, I think, difficult. I don’t know if I’m doing it right. (R6)
Beliefs about PFMT
I think it would be really good, I mean it [the incontinence] has not improved with age either. (R7)
Desires about PFMT
First, individual training or information a number of times and then in a group. (R3)
Lack of information about incontinence and PFMT
The value of an effective treatment for incontinence
Respondent number | 1. How much are you willing to pay for a treatment that would lead to complete recovery from incontinence? (SEK/Euro/US dollars) | 2. How much are you willing to pay for a treatment that would lead to recovery to the point that incontinence does not affect your daily life? (SEK/Euro/US dollars) | 3. How much time are you willing to spend on a treatment that would lead to complete recovery from incontinence? (h per week) | 4. How much time are you willing to spend on a treatment that would lead to recovery to the point that incontinence does not affect your daily life? (h per week) |
---|---|---|---|---|
1 | 3000/314/348 | 3000/314/348 | 3.5 | 3.5 |
2 | 150,000/15,691/17,407 | 50,000/5230/5802 | All time needed | All time needed |
3 | 10,000/1046/1160 | 10,000/1046/1160 | All time needed | All time needed |
4a
| – | – | – | – |
5 | 150,000/15,691/17,407 | 50,000/5230/5802 | All time needed | All time needed |
6 | 100,000/10,461/11,605 | 100,000/10,461/11,605 | 7–14 | 2–3 |
7 | 2000 | 2000 | 1 year | 1 year |
8 | 1,000,000/104,609/116,046 | 1,000,000/104,609/116,046 | 4 | 4 |
9 | 1,000,000/104,609/116,046 | 1,000,000/104,609/116,046 | All time needed | All time needed |
10a
| – | – | All time needed | All time needed |
11 | Priceless | Priceless | All time needed | All time needed |
12 | 10,000/1046/1160 | 10,000/1046/1160 | All time needed | All time needed |
13 | 500,000/52,305/58,023 | 500,000/52,305/58,023 | 2–3 | 2–3 |