After reviewing the participants' perspectives on the factors affecting their help-seeking behaviors, two themes were obtained. In the process of analyzing and comparing data after categorizing codes and eliminating similar codes, 60 codes, 36 sub-sub-categories,17 sub-categories, 6 main categories, and 2 themes (facilitator and inhibitor) were extracted (Table 2). The inhibitor theme included the main categories of "not perceiving disease ", "shame", " negative support of important others ", and " non-optimal health care system" and the facilitator theme included " reduced quality of life " and "positive support of important others".
Table 1 An example of analysis process.
Table 2 Classification of Theme, main categories and subcategories.
Not perceiving disease was one of the reasons for not seeking help that it consists of unawareness, not accepting incontinence as a disease, fear- worry and self-care.
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, mixed type).
"Anyway, we have given birth many times; eventually, incontinence is related to many pregnancies and deliveries …" (Participant 13, age 75, mixed type).
"I have urinary incontinence, but I don't have any pain or bleeding at all…" (Participant 31, age 44, mixed type).
Some participants controlled the disease by adapting to its symptoms and changing their eating habits. One participant said, "I follow a diet of fruits, vegetables, and herbs" (Participant 2, age 75, urgency type).
"I try not to drink water or tea" (Participant 1, age 31, 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 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, 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, urgency type).
Fear and worry about the consequences of the disease, as well as fear of invasive treatments, also affected referral rates.
"I think women are afraid to go to a physician for their disease because of being diagnosed with a dangerous disease" (Participant 28, age 54, urgency type).
"If a doctor tells me to have surgery, I won't do it; why should I put myself at the mercy of the surgeon's knife?" (Participant 13, age 75, mixed type).
In some participants, the shame of having UI 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, 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, stress type).
Another part of the shame was the embarrassment of exposing the genital area. Participants were ashamed of being examined by their caregivers and even 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, 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, urgency type).
After realizing the presence of male students in the doctor's room, one participant 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, mixed type).
Non-optimal health care system
Diagnostic and therapeutic costs were important in the 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 that was covered by insurance. I said, 'What can I do? " (Participants 23, age 50, 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, urgency type).
"I just came for a check-up, but they did a lot of tests, an ultrasound; they exhausted me…. I paid a lot of money" (Participant 31, age 44, mixed type).
Inaccessibility to services in some areas, unavailability (for example, long waiting time), lack of patient referral because of the defective referral system, and inappropriate behavior (as negligence, disrespect) of caregivers were some of the poor quality of services that participants complained about. One participant said:
.... They [care providers] said that I should do the urodynamictest whose device is not available here; they told me to go to … [Province center]" (Participant 27, age 55, mixed type).
"If I didn't have the necessary time, I would go to private centers; now that I have the time, I came here (public hospital). You have to wait a long time for your turn" (Participant 14, age 48, 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 to go, what to do" (Participant 18, age 42, 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, 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, urgency type).
Negative support of important others
Important others had a dual effect (negative and positive) on the patients' lives. In the inhibitor theme, negative support of 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 treatment can cause doubt about the consequences of treatment and therefore, prevent help- seeking.
"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, 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, 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, mixed type).
In the inhibitor theme, the role of the family and spouse in referring for treatment was considerable. On the one hand, misconceptions in the family affected help-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 perception about the problem, as well as his lack of support, delayed 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 have to lie" (Participants 33, age 51, stress type).
"My family thinks that I'm lax" (Participant 8, age 52, 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, 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, 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, stress type).
Positive support of important others
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 seek help. Another way others facilitated help-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 help-seeking. 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, 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 whenI could get better with one pill!! " (Participant 20, age 62, 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, stress type).
Reduced quality of life
Reduced quality of life was one of the factors that were extracted as a facilitator for help-seeking from the participants' views. 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 the past couple of 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, mixed type).
"I go to the bathrooma lot, that's why I get wet all the time; my body is constantly burning".
(Participants 15, age 60, mixed type).
"I couldn't go out much; I didn't go to parties, If that was not possible, I stayed there for just two or three hours, I was tired" (Participant 23, age 50, mixed type).
"I was obsessed with the bathroom, I was tired, I was looking for it everywhere I went …" (Participant 15, age 60, mixed type).