Table 3 Themes, subthemes and sample quotations of patients’ life and treatment experience
Themes | Sub-themes | Sample quotations |
|---|---|---|
Disturbed life | 1. Poor sleep quality | “I cannot sleep well. How can I sleep? I peed 20 or 30 times a night. I used a bottle to get urine at night, but only two drops at a time. No sooner had I put the jar down then I had to pee again, not even for five minutes” – Patient 15 “She has a bed and I have a bed. She didn’t sleep very well. And when I woke up at night, it affected her even more.” – Patient 6 |
2. Decreased sexual function | “I haven’t had sex for more than a year, and I couldn’t even get an erection in the last two or three months” – Patient 17 “The sex life is long gone, and the sexual function is no longer good. The prostate must affect this” – Patient 33 | |
3. Travel inconvenience | “I didn’t take the bus when I came to Beijing, because the bus seldom stopped on the road. If I have no place to pee, I can’t hold on. This is the obvious trouble” – Patient 6 “I had no choice. There was no bathroom on the street, so I had to pee in the woods by the road” – Patient 8 “Once, I was driving outside and got stuck in traffic and had nowhere to go. I held in my urine for a long time and ended up with acute urinary retention” – Patient 34 | |
4. Limited social life | “I’m afraid to go too far, and once I get out, I have to keep an eye on where the bathroom is” – Patient 4 “Sometimes I couldn’t find the toilet, so I had to pee in my pants. It was very embarrassing. So I don’t want to be with others” – Patient 21 | |
5. Affecting work | “I had to ask the students for a leave because I couldn’t hold my urine in class. I said I had to go out for a while” – Patient 4 “The meeting lasted a long time……I had to go to the bathroom every hour, so I didn’t know what the meeting was about” – Patient 18 | |
Mental burden | 1. Long term negative emotions | “I always have a feeling of depression, but cannot say anything out. I can only console myself with the fact that I am old and just have a small problem” – Patient 1 “I just want to have surgery. I couldn’t stand it. That feeling is really worse than death” – Patient 15 |
2. Occasional anxiety | “A bad night’s sleep affects my mood. But when the daytime came, it seemed to be forgotten” – Patient 4 “Only when I couldn’t pee, I feel bad and irritable” – Patient 13 | |
Disease cognition and communication | 1. Lack of knowledge of the disease | “I just know it is prostatic hyperplasia, but I don’t understand its mechanism or its harm” – Patient 5 “I don’t know. I heard from my son-in-law that hyperplasia was a tumour” – Patient 20 “I know nothing about this disease. I don’t understand this” – Patient 28 |
2. Lack of knowledge of the surgery | “No, I’m completely blank about the surgery, and I hadn’t even planned to be hospitalized” – Patient 11 “I think it is a total resection of the prostate. There is no substitute for parts of the human body and surgery can affect life span” – Patient 36 | |
3. Lack of effective communication | “As this is a private matter, I do not like to talk about it and I do not like to share my negative aspects with others” – Patient 8 “I didn’t tell my family until I couldn’t pee, and then my daughter took me in for a check-up” – Patient 20 “I have not communicated with my children about these things and I think it is not a big disease. If I can bear it, I’ll bear it” – Patient 3 | |
4. Difficulty in obtaining information | “Everyone has this problem, but some people say it is prostatitis and can be treated by sitz bath” – Patient 4 “I have read some introductions on the Internet. But some things on the Internet are one-sided” – Patient 30 | |
Delayed treatment | 1. Insufficient attention | “I lacked this awareness (of seeking treatment) and thought my health was not bad” – Patient 3 “I didn’t care. I didn’t take it seriously” – Patient 42 |
2. Concerns about surgery | “I’m worried about that it would relapse soon after the surgery, or that it would be incontinence” – Patient 27 | |
3. Poor economic or medical conditions | “I didn’t go to see a doctor in my hometown. I just put up with it because I didn’t have money” – Patient 28 | |
Medication status | 1. Discontinuation medication | “There was no difference in subjective feelings between taking and not taking pills. Then I stopped taking them” – Patient 34 “I don’t usually take them (tamsulosin) because they make me dizzy. Sometimes blood pressure drops after taking these pills” – Patient 30 |
2. Irregular medication | “I just take some medicine when it is painful to urinate. No pain, no medicine. I don’t take my medication consistently” – Patient 22 | |
3. Sub-standard medication | “I went to the drugstore and bought some medicine by myself. But I didn’t go to the hospital or see a doctor. I bought it by myself” – Patient 13 | |
4. Never taken medicine | “I asked the doctor whether the medicine would make my prostate smaller. He said no, so I did not take it” – Patient 36 | |
Hospital visits barriers | 1. Severe dependence on children | “My daughter helped me register and queue up. I couldn’t do it. I couldn’t even take the subway here by myself. I couldn’t find it” – Patient 24 “When I couldn’t pee, I called my son and waited to see a doctor. He had something to do at work and didn’t take me to hospital until 2 p.m” – Patient 15 “My visit to see a doctor wasted my children’s time and had a great impact on their work and rest” – Patient 2 |
2. Lack of outpatient guidance | “The hospital is too big and you can’t find the examination room without guidance. So you really need someone to guide” – Patient 33 “Sometimes I didn’t know where to go for formalities and queues, and I couldn’t find the right place” – Patient 4 “The barrier is to register online or get a number on the queueing machine. Some procedures are really difficult for older people” – Patient 5 | |
3. Long waiting time | “There were so many people here that it took days to get in line” – Patient 3 “I came here in August and the doctor arranged an ultrasound and a urodynamic. But I could not do urodynamic until September 7th” – Patient 32 | |
Medical insurance issues | 1. Low reimbursement ratio for ecdemic medical insurance | “This belongs to ecdemic medical insurance. I can get 30% reimbursement when I go back” – Patient 1 “I can get reimbursement for my ecdemic medical insurance here, but only a little money. What’s the use of that?” – Patient 28 |
2. Complicated medical insurance formalities | “The local medical insurance system was always in a state of maintenance and I failed to apply for ecdemic medical insurance when I came here” – Patient 25 “I come from my hometown and I need a temporary residential permit for reimbursement. But I don’t have a temporary residential permit now and I’m also not clear about the formalities” – Patient 32 | |
3. Requirement of a referral certificate | “With a referral certificate, I can get 20% more reimbursement in our local” – Patient 11 “It is not easy to get a referral for this disease, because this disease (BPH) is not a serious disease in our hometown” – Patient 33 |