The participants of the study included 34 women with urinary incontinence with an average age of 54.50 years (range: 29–75 years) (Table 1 Sociodemographic characteristics of participants). The minimum and maximum duration of urinary incontinence in the participants was 1 year and 25 years; also, the lowest and highest number of childbirths were zero (0) and 11 times, respectively.
Table 1
Demographic characteristics of participants
Variable | Mean(SD) | |
Age (in years) | 54.50 (11.31) | |
Education | Number | Percent |
Illiterate | 8 | 23.5 |
Diploma and under diploma | 22 | 64.7 |
Higher education | 4 | 11.8 |
Occupation | | |
Housewife | 28 | 82.4 |
Employed | 6 | 17.6 |
Type of incontinence | | |
Stress | 7 | 20.6 |
Urgency | 14 | 41.2 |
Mixed | 13 | 38.2 |
After reviewing the participants' perspective on the factors affecting their help-seeking behaviors, two themes were obtained. In the process of analyzing and comparing data after categorization codes and eliminating similar codes, 60 codes, 36 sub-sub-categories,17 sub-categories, 6 main categories, and 2 themes (deterrents and facilitators) were extracted (Table 2 and Fig. 1 Classification of themes). The deterring themes included the main categories of "not perceiving disease ", "shame", "negative influence of important others", and "the health care system" and the facilitating themes included "weakening the quality of life" and "positive effect of important others".
Table 2
Classification of Theme, main categories and subcategories
Sub-Subcategories | Subcategories | Main categories | Theme |
Attributing to natural processes | Non-acceptance incontinence as a disease | Not perceiving disease | Deterrent |
Non-warning nature of incontinence | | | |
Adaptation to symptoms | Self-control | | |
Changing eating habits | | | |
Unawareness of the nature of the disease | Unawareness | | |
Unawareness of treatment | | | |
Fear and worry investigation of the disease | Fear- worry | | |
Fear of invasive treatments | | | |
Concealment of the disease | Shame related to the nature of incontinence | Shame | |
Shame of expressing to caregivers | | | |
Shame of talking about genital area | Shame related to the genital area | | |
Shame of observation of genital area | | | |
Cost of diagnostic | Enormous costs | Health care system | |
Cost of therapeutic | | | |
Inaccessibility | Poor quality of care | | |
Unavailability | | | |
Defective reference system | | | |
Inappropriate behavior of caregivers | | | |
Providing incorrect information | Negative effect on decision-making | Negative effect of others | |
Dissuade from visiting | | | |
Reverse therapeutic experiences | Creating doubts about treatment outcomes | | |
Treatment as ineffective | | | |
Misconceptions in the family | Role of family deterrence | | |
Numerous expectations from a woman | | | |
Lack of perception of the spouse's problem | Role of husband deterrence | | |
Lack of spouse support | | | |
Encouragement to refer | Positive effect on decision-making | Positive effect of others | Facilitator |
Recommend treatment places | | | |
Expressing experiences of improving | Transfer positive therapeutic experiences | | |
Confirm of non-invasive treatments | | | |
Emotional support | Support | | |
Financial support | | | |
Intensity increase of symptoms | Exacerbation of the disease | Weakening quality of life | |
Symptoms of accompanying weakening | | | |
Limitations | Pervasiveness of the disease | | |
Exhausted | | | |
Table 2 Classification of Theme, main categories and subcategories.
Not Perceiving Disease
The reason why some participants did not seek help, was not perceiving incontinence that it resulted from not accepting incontinence as a disease, unawareness, fear, or worry. In addition, this not perceiving led to self-care, resulting in avoidance of referral to treatment.
Not accepting incontinence as a disease was related to its attribution to natural processes, as well as the absence of warning signs. In this regard, one participant said, “Incontinence is normal for those who are getting older" (Participant 5, age 64, under diploma, housewife, 21 years of incontinence, 2 parturitions, mixed type).
"Anyway, we have given birth many times; eventually, incontinence relates to many pregnancies and deliveries …" (Participant 13, age 75, illiterate, housewife, 10 years of incontinence, 9 parturitions, mixed type).
"I have urinary incontinence, but I don't have any pain or bleeding at all…". (Participant 31, age 44, diploma, housewife, 1 year of incontinence, 2 parturitions, mixed type).
Some participants controlled the disease by adapting to the symptoms of incontinence and changing their eating habits. One participant said, "I follow a diet of fruits, vegetables, and herbs"(Participant 2, age 75, higher education, employed, 25 years of incontinence, 2 parturitions, urgency type).
"I try not to drink water or tea" (Participant 1, age 31, under diploma, employed, 4 years of incontinence, 1 parturition, mixed type).
Unawareness of the nature of the disease (as the cause of disease genesis) and unawareness of its treatment prevents people from making the right decision in dealing with it. As one participant stated:"Where I worked, I used the well water; it was near a gas station, and people said the gasoline was leaking into the well. When we used water, it had a bad smell, and after that, I developed this urinary problem" (Participant 1, age 31, under diploma, employed, 4 years of incontinence, 1 parturition, mixed type).
"Women with the disease don't pursue treatment because it has no treatment. I don't know if there is a cure" (Participant 2, age 75, higher education, housewife, 25 years of incontinence, 2 parturitions, urgency type).
Fear and worry about the consequences of the disease investigate, as well as fear of invasive treatments was effective on referral.
"I think women are afraid that go to a physician for their disease because of being diagnosed with a dangerous disease" (Participant 28, age 54, under diploma, housewife, 1 year of incontinence, 4 parturitions, urgency type).
"If a doctor tells me to have a surgery, I won't do it; why should I put myself at the mercy of the surgeon's knife?" (Participant 13, age 75, illiterate, housewife, 10 years of incontinence, 9 parturitions, mixed type).
Shame
In some participants, the shame of having incontinence led to hiding the disease and not telling the problem to healthcare professionals.
"I didn't tell anyone about my problem; it's not a matter to be talked about ..." (Participant 3, age 67, diploma, housewife, 2 years of incontinence, 4 parturitions, mixed type).
"I'm embarrassed .... it's so hard .... to go to the doctor and say I'm incontinent; that I can't hold it …". (Participant 17, age 50, diploma, housewife, 7 years of incontinence, 4 parturitions, stress type).
Another part of the shame was shame of exposing the genital area. Participants were ashamed of being examined by their caregivers and even of talking about it. This embarrassment became more apparent in relation to male healthcare specialists, so they preferred same-sex caregiver.
" I told myself that if I went to the doctor, he might want to examine me; he would look down there (the genital area), which I wouldn't allow " (Participant 13, age 75, illiterate, housewife, 10 years of incontinence, 9 parturitions, mixed type).
"I didn't go to see the doctor; I took medicine myself; I'm embarrassed to talk about a problem in the genital area…” (Participant 24, age 48, under diploma, housewife, 1 year of incontinence, 5 parturitions, urgency type).
A participant who was upset after realizing the presence of male students in the doctor's room said "I came here to be examined by a female doctor, but the men examined me; her students were male; they're the ones examining the patients" (Participant 21, age 69, under diploma, housewife, 5 years of incontinence, 3 parturitions, mixed type).
The Health Care System
Diagnostic and therapeutic costs have been found to be effective in use of medical services, because many people are unable to afford them.
"The medicine is expensive; my husband told me to, tell the doctor to prescribe medicine covered by insurance. I said, 'What can I do? " (Participants 23, age 50, under diploma, housewife, 1 year of incontinence, 3 parturitions, mixed type).
"I heard that this hospital is free, so I came here ... I have health insurance. I just paid for the commute" (Participant 9, age 61, illiterate, housewife, 15 years of incontinence, 7 parturitions, urgency type).
"I just came for a check-up, but they gave a lot of tests, an ultrasound; they exhausted me…. I paid a lot of money" (Participant 31, age 44, diploma, housewife, 1 years of incontinence, 2 parturitions, mixed type).
Inaccessibility to services in some areas, unavailability (for example, long waiting time), lack of referral of patients due to the defective referral system, and inappropriate behavior of caregivers were some of the poor quality of services that participants complained about. One participant said in this regard:
.... They [care providers] said that I should do the urodynamic test whose device is not available here; they told me to go to … [Province center]" (Participant 27, age 55, under diploma, housewife, 2 years of incontinence, 4 parturitions, mixed type).
"If I didn't have the necessary time, I went to private centers; now that I have the time, I have come here (public hospital). You have to wait a long time for your turn" (Participant 14, age 48, diploma, housewife, 1 year of incontinence, 2 parturitions, stress type).
"One says do surgery, another one says no, the other one says go to that clinic, another one says go to this doctor; they give addresses, this is better, that's better; I don't know, where should I go? What can I do?" (Participant 18, age 42, under diploma, housewife, 3 years of incontinence, 3 parturitions, urgency type).
One of the patients, complaining of the disrespectful treatment said, "Excuse me, but some people insult us; for example, my belly is big, one of them said 'What a big belly,' and 'Why is your belly so big?' They insulted me repeatedly, for this reason. I didn't like that hospital ...; that's why I didn't go to that hospital anymore" (Participant 23, age 50, under diploma, housewife, 1 year of incontinence, 3 parturitions, mixed type).
"I'm a patient of Dr...., but her students always examine me. She is there too, but she doesn't answer me; she doesn't pay attention to the patient at all" (Participant 4, age 63, illiterate, housewife, 1 year of incontinence, 6 parturitions, urgency type).
Important Others
Important others had a dual effect on the patients' life. In the deterrent theme, important others by incorrect information about the disease and dissuade the patient from visiting had a negative effect on a person's decision to seek help. Furthermore, the expression of reverse therapeutic experiences and ineffective can cause doubt about the consequences of treatment and therefore, prevent referral.
"My sister-in-law has been suffering from urinary incontinence for almost 6 years. She says, it's because of the cesarean, and that I will get better; she tells me not to go to the clinic, I'll get better, it's a complication of surgery" (Participant 26, age 42, illiterate, housewife, 1 year of incontinence, 3 parturitions, urgency type).
"My friends say we have the same problem, one of my friends had surgery and says she still has the problem; she tells me not to do it and that it's useless" (Participant 10, age 69, under diploma, housewife, 8 years of incontinence, 3 parturitions, mixed type).
"One of my daughters said that her mother-in-law had this problem, so she had surgery; the doctor pierced her bladder during the operation, and now, instead of a few drops, she has become completely incontinent"... (Participant 23, age 50, under diploma, housewife, 1 year of incontinence, 3 parturitions, mixed type).
In the deterrent theme, the role of the family and spouse in referring to treatment was significant. On the one hand, misconceptions in the family affected on seeking behaviors, and on the other hand, the various expectations and responsibilities of the woman in the family prevented her from paying attention to her own problem. Moreover, her husband's lack of perceiving of the problem, as well as his lack of support, reinforced the lack of seeking help.The women said:
"My children, my daughter-in-law, and my son-in-law shouldn't know about my incontinence problem. If they find out, they think I'm loose. It's ugly for me. If I want to see a doctor, I will have to lie" (Participants 33, age 51, diploma, employed, 25 years of incontinence, 3 parturitions, stress type).
"My family thinks that I'm lax" (Participant 8, age 52, under diploma, employed, 9 years of incontinence, 3 parturitions, urgency type).
"Look, I did the urodynamic test two years ago. I haven't been able to show it to a doctor yet. I have a handicapped child at home and a lot of work to do; I'm so busy" (Participant 15, age 60, under diploma, housewife, 3 years of incontinence, 4 parturitions, mixed type).
"My husband says 'Can't you go to the bathroom sooner?' I'm under a lot of pressure involuntarily, I can't hold myself; I can't control it" (Participant 4, age 63, illiterate, housewife, 1 year of incontinence, 6 parturitions, urgency type).
"At least I don't have financial problems, but what about other women?!! They're financially dependent on their husbands, so they do not have the authority to see a doctor whenever they wanted " (Participant 33, age 51, diploma, employed, 25 years of incontinence, 3 parturitions, stress type).
In the facilitator theme, others encouraged patients to see a doctor, as well as suggesting places to get treatment, that had a positive effect on the decision to refer. Another way in which the others facilitated treatment-seeking behaviors was by providing positive treatment experiences. Therefore, speaking about signs of recovery after receiving treatment, as well as transferring the experience of non-invasive treatments pursued patients to use treatment. The supports were also a stimulus for refer. Participants said:
"My gynecologist told me to follow up for the urinary problems, and my sister confirmed it, she said go visit a doctor, follow up your problem " (Participant 19, age 35, higher education
, housewife, 1 year of incontinence, 1 parturition, stress type).
"My mother also has this problem, she went to see a doctor; the doctor prescribed pills for her; she says she's better …I said to myself, why did I bother myself when I could get better with one pill!! " (Participant 20, age 62, illiterate, housewife, 2 years of incontinence,11 parturitions, urgency type).
"My husband isn't like some men who don't pay attention to their wives. If I have surgery, I'm not worried because he does everything for me" (Participant 32, age 47, illiterate, housewife, 12 years of incontinence, 5 parturitions, stress type).
Weakening The Quality Of Life
The weakening in quality of life was one of the factors that were extracted as a facilitator from the participants' interviews. As the symptoms worsened, the limitations, and exhaustion from the disease, increased the chances of seeking help.
"It wasn't so bad before; it's gotten worse for one or two months. When I get out of bed to go to the bathroom in our bedroom, before I take three steps, I lose control of my urine" (Participant 21, age 69, under diploma, housewife, 5 years of incontinence, 3 parturitions, mixed type).
"I go to the bathroom a lot, that's why I get wet all the time, my body is constantly burning".
(Participants 15, age 60, under diploma, housewife, 3 years of incontinence, 4 parturitions, mixed type).
"I couldn't go out much, I didn't go to a party, If that was not possible, I stayed there for just two or three hours, I was tired" (Participant 23, age 50, under diploma, housewife, 1 year of incontinence,3 parturitions, mixed type).
"I was obsessed with the bathroom, I was tired, I was looking for it everywhere I went …" (Participant 15, age 60, under diploma, housewife, 3 years of incontinence, 4 parturitions, mixed type).