Table 2.

Selected quotations to illustrate barriers by themes in focus groups that assessed barriers and facilitators of community screening for kidney disease

ThemeQuotations
Knowledge themes
Limited understanding of kidney diseaseKidney disease makes people lose weight (FG2 2)
Ignorance can be a huge factor; people just don’t know about the kidneys (FG3 1)
Poor understanding of risk factorsI don’t understand what it means when my protein levels are high in the urine test. It threw me off—I had high levels of protein, but I’m not a red meat kind of person (FG3 2)
When my husband was diagnosed with high blood pressure, he initially wasn’t compliant with his medications. And I was the one to put the fear of God in him to make him understand why it’s important to make sure your blood pressure is managed… (FG3 5)
Low health literacyMost people are health illiterate, and so, they don’t know (FG3 5)
People don’t know that sodium is salt. You say lower your sodium, and they don’t know what you’re talking about (FG3 1)
No belief that screening has benefitsWe go to job fairs, we go to hair fairs, we do all those things, but there’s just something about going to health fairs that says to me that it is something [that we can give up]… (FG1 2)
The health fair is a necessity, but enough people don’t participate. A lot of times, we won’t come out unless there’s a gimmick or it’s not announced properly or if I don’t call Brother X to make sure he’s coming, I won’t go… (FG2 5)
My relatives all lived long lives up to the high 90s and 100s. My grandfather was adamant about not going to the doctor, and he lived to be 98 yr old…you stop and think and start to believe that you don’t need to go to the doctor (FG2 6)
Lack of CKD education and testing from cliniciansThe failure here is the primary care providers. Unless you have an issue, they will not discuss it in general. Even routine physicals are so retracted now partly due to insurance companies, so unless you have a history of CKD or are more aware and bring it yourself, it won’t be discussed (FG1 1)
My primary care provider has told me nothing about kidney disease (FG3 2)
And why don’t patients ask? Because they assume you know and they don’t want to look stupid, so they keep their mouths shut (FG3 10)
A lot of times, doctors won’t say anything unless they see something. But because of our culture, I think it’s something we need to learn more about (FG3 1)
I don’t think a lot of information is given to the community. I don’t specialize in kidney disease, but I will bet that black Americans get this disease more than anyone else, but yet a lot of the information is not out there in our health departments; our local health care centers… (FG2 1)
“Ignorance is bliss”People don’t ask [or go to the doctor], because they don’t want to know (FG3 11)
I think that the problem with the Y chromosome is that it has the denial gene inside of it (FG3 9)
…[P]eople don’t want to make changes. They don’t want to get screened, because they want to keep doing the things that they’re doing (FG3 5)
Cultural issues
Low trust in health care activitiesI think that some people, especially in the black American community, are not trusting of certain doctors, and they just don’t believe that they are getting what they need. They just don’t trust the community providers, and they just don’t go (FG2 7)
Some people are worried that the urine tests look for something other than protein—they just assume that you’re testing for drugs (FG3 1)
Limited value for healthI would say not valuing your health would be a deterrent for health screening of any sort. This is because, from a health education standpoint, we don’t make changes until we value it (FG3 1)
I really wanted my sister to come to this focus group, because she is “antihealth.” She takes a pill when she chooses to (FG1 5)
I’ve seen those illnesses in my family, and then, I say I wanna live…but a lot of people don’t know, and I see it all the time. I see it in people I’m around with. Hey, you need to get checked out. No, I’m cool; I’m good (FG3 12)
Strong spirituality beliefsBecause it’s like God is going to heal it; God’s going to take care of my body. God also tells us that our body is the temple; it’s kind of up to us to take care of our body. We always think I can pray for it here and there, I can do this. God’s always said, if you destroy the temple (your body), He will destroy you. So you kind of have to always throw that out there too… (FG1 4)
In our community, a lot of times, we have great faith, and we believe that, when it comes to certain things, we can just give it to God and let him deal with it. When we say that we don’t claim it, what that means is that we’re not going to worry about it, because it’s not convenient right now… (FG3 4)
Fear of side effects, ego, and machismoThis is caused by fear, ego, macho. A lot of men are afraid that if they go to the doctor, and they find out that they have high blood pressure, they will be given medications that will decrease their libido, sex drive (FG1 4)
Some of it has to do with the social paradigm that men have to be the strong ones; they have to be the ones who are supposed to be the helpers, and if they are the ones who get sick, then their manhood is challenged (FG3 3)
Emotions
Explicit kidney disease–related fearMy fear is that maybe I have a predisposition for kidney disease…my mother initially resisted dialysis; my sister is also on dialysis… (FG1 1)
Some people just do not want to know. We had this huge health fair, and you had to beg them to come get their blood pressure checked. Sometimes people just do not want to know, because they are more afraid of what the results will be, so they just say no, “I’ll just stick my head in the sand.” (FG2 4)
I think it can be frightening…more so for older people (FG2 7)
And young people are afraid of knowing, I believe (FG1 6)
Young people feel like there’s no point in finding out diagnosis…we’re all going to die with something…they make excuses (FG1 6)
Embarrassment and privacyOne of the things that I’ve found talking to different people is that, when you do a health fair at work, people are less prone to participate, because they’re really not sure if you have a health issue if it’s going to get back to your employer (FG1 6)
The location of the health fair matters…for instance, the corridor was not private enough for me (FG1 2)
I noticed that, at the health care which we had, when you were told to go over to that table, then everyone knew that something was not right…people were kinda looking around (FG1 8)
Environmental/socioeconomic issues
Financial burdenThe one thing that holds a lot of people back is health insurance and finances; even if you have health insurance, you still have to pay a certain amount, which people know, I can’t afford that, I just can’t afford to go with that. For instance, if I was to go into the hospital, my deductible will be $5000, and so well, I said that I’m not going. I can’t afford$5000; I’ll have to sell my house just to stay alive, so there are those kinds of factors (FG1 4)
I think finances really prevent a lot of people from checking up on themselves or trying (FG1 5)
…[S]ome people can’t afford to go to the doctor and can’t afford insurance, so they don’t go get checked out until it’s too late or they have some type of disease, and then, they don’t have a choice but at health fairs; people come out to get a free screening and then maybe get checkups or try to get insurance and stuff… (FG1 4)
Lack of convenienceSometimes it depends on if you have other competing activities on that same day at the same time. You may not get as much turn out as you would otherwise (FG3 13)
…[I]f the health fair is conducted in the mall, those who don’t like the mall may not attend, while those who like the mall may prefer to spend their time shopping… (FG1 3)
Poor/trivial advertisementI’ve gone to a few health fairs at certain churches where a large portion of the membership didn’t know about the health fair (FG3 5)
I don’t always read emails or respond to texts [immediately] (FG1 6)
You hear a lot about breast cancer, heart disease, etc., but you hardly ever hear about kidney disease (FG1 8)
Lack of onsite incentivesIf the health fair seems like it’s going to be really, really boring, then I don’t want to do it (FG3 4)
No one wants to show up at a health fair just to get stuck with a needle (FG3 3)
• FG, focus group.