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Table 2 Illustrative quotes by quality of care domain, sub-theme and satisfaction category

From: Quality of care for Black and Latina women living with HIV in the U.S.: a qualitative study

Care Quality Domain

Sub-Theme

Experience a

Quote

Effectiveness

Knowledge-Based Care

General

In response to the question, “What are you looking for [in a health care provider]?”: Somebody that is knowledgeable, that knows what she’s talkin’ about in terms of medications and treatments and stuff like that. Somebody that knows.

Satisfaction

He’s very educational when it comes to the different medications and different programs out there that might help me. Usually, if I have a problem that comes up, the medication he gives me knock it right out … I know my body, and it doesn’t feel right, …I will complain to him. He will say, “Okay, we gonna test you for this,” and then come to find out I might have a nerve problem or somethin’ like that.

Desired Care Outcomes

Satisfaction

My pressure was so high ... I went to the emergency room. Them folks kept me in there overnight… They kept running stuff, and then they finally gave me some medicine, and my pressure went down, but they take their time. They ain’t fit’n to rush and just come in there and go, “Well, we ain’t find nothin’ in your labs. Well, everything good,” and send you on about your way. They’re gonna make sure.

Dissatisfaction

I have issues with them because … I get headaches real bad, and they told me everything looked good, but I still have the headaches so bad. With these doctors from other hospitals, not here, they started giving me this MIRs and different head scans and stuff, and keep telling everything looked good, but I constantly have these.

Efficiency

Continuity of Care

Dissatisfaction

As far as me being comfortable with one provider, and then the idea of them switching providers and not giving you a notice, that’s awful hard when somebody walk in the room. You sittin’ there, you’ve been there maybe a hour, 45 min waiting there. Then the stranger is [there, and] you got to start back over with somebody, opening up your heart.

Care Coordination

Satisfaction

He’s been so respectful and so helpful for me. Just like last time I went the hospital. Pressure was high, and next thing I know the doctor called, my doctor from here called and my social worker called, and even with my high blood pressure… I’ve got a blood pressure partner that calls to check, how is my pressure, have I took my medicine today, or something like that.

Dissatisfaction

I had the same experience with the pharmacy. The HIV-positive medication. Always tellin’ me I don’t have refills. I’m like, "How can that be?" Then I call my doctor and then the secretary tell me, "No. The pharmacy has to call me." Then I call the pharmacy and tell the pharmacy and the pharmacy tells me, "Well, tell them to call us." I’m like, "Listen. Y’all gotta get this shit together. Who am I supposed to call to get my medicine?" It should not be that difficult. If I need a refill, pharmacy should be able to call the doctor’s office or send them a email, whatever it is that you could do. Everything is electronically now. It shouldn’t be a problem. Press one button and ask for the refills. It’s not like I’m new. I’m still three days with no medicine.

Necessity of Care

Dissatisfaction

One time, I had gone to the emergency room … because I thought I was having a heart attack, which turned out to be an anxiety attack, which was all figured out three days later, after me being in the hospital three days.

Equity

Differential Treatment

Satisfaction

The doctors, they didn’t treat me no different. To this day, they’re still the same.

Dissatisfaction

I had one woman who is the first one who is really not friendly at all. No kinda bedside manner. Nothin’ like that. She was kinda halfway scared to touch ya… [HIV] is bad enough… I don’t wanna talk to the doctor and feel like that too.

Dissatisfaction

Well, I had gotten sick with pneumonia. I went to [hospital]. Biggest mistake I could’ve ever made. When they found that I had HIV, they did not wanna treat me. They would not even examine me.

Differential Resource Allocation

Dissatisfaction

Why they gettin’ all these funding, but every time I ask for somethin’, there’s—they cut the budget.... There’s no funding for that… You go over in the adolescent program, they treatin’ them like kings and queens. I mean, I get that they’re young, but—we dealin’ with the same issues here.

Patient-Centeredness

Shared Decision-Making

Satisfaction

She’s great. She’s a great listener. Whatever direction you wanna go, she’s there. She’s supporting whatever decisions that you make, and whatever help, whatever’s going with you, and if it’s not within [her clinic], and if it’s something else, she’ll do it. If you need a referral or something, she’ll do it. She’s really wholesome.

Dissatisfaction

I’m at the behavior clinic here, I got this [provider]—and think he knows everything too…. He got his opinion about somethin’, and I got my opinion. He talkin’ my way is a fact, I told him, “No, it’s your fact.” I really don’t wanna hear what he was talkin’ about…

Compassionate Care

General

You do wanna be with a provider that you feel like, “All right, he’s looking out for my best interest,” not, “Oh, he’s lookin’ out to do the surgery so he can make this amount of money off of me.” See, that’s not the type of feeling you want from somebody and that’s the only thing. You just want people to at least have that empathy or at least be able to sympathize with you sometimes and understand where you’re comin’ from.

Satisfaction

Yeah, I had some good experience, too. The psychiatrist I found—see, that doctor, the psychiatrist, she was so humble. I was goin’ through somethin’ deep. She came to my house. I was shocked. I said, “Oh, y’all do house calls?” Then she came to visit me in the hospital. I had no support.

Nonjudgmental Care

Satisfaction

When asked: “what are some things that are important in a relationship with your provider?” Well, definitely that she listens. And she’s open to whatever concerns I may have, even if it’s something that I have reoccurring, that she’s bashed me over the head about doing or not doing. And she’ll still come to me with open arms and just say, "Well okay, you have to keep in mind that this is what’s gonna happen, but you still come back, you still call me, and don’t worry about anything like that."

Dissatisfaction

When I tell you that I haven’t taken my meds for six months, or I don’t even know the last time I’ve taken my meds, and you go, "Well, what’s wrong with you? Why would you do that?" …. I could tell when you’re coming down on me because of the fact that you actually genuinely care, or you feel like you just feel the need to just come down on me because you think I’m stupid and you think I’m crazy. You’re not even trying to figure out why it is that I just have these moments when I just stop doing this. It’s a depression thing for me…. It’s a moment in time. Sometimes the moment could last a last couple of days, couple of weeks, couple of months, but it’s a moment in time. My provider, if you know me, you know that I have had a timeframe…. That’s the connection for me. That’s what matters the most, if you can be understanding, nonjudgmental, and show me that you actually care about what’s going on with me.

Care Accommodation

Dissatisfaction

I tell them give me the appointment for early, because my health aide is with me from 9:00 to 1:00. They wanna give me the appointments at 3:30, 4:00. Listen, I like to do everything early because after a while, my body starts to shut down.... No, I don’t wanna come to the hospital at that time.

Satisfaction

I think the best thing, as far as with HIV care and just the accommodations are generally someone of my size can’t find a scale. I have to walk further places. When they know that I’m coming in, they do go above and beyond. When I go, it’s very busy. I know that they’re coming out of their comfort zone, in order to accommodate me. I really appreciate that. It makes the visit go better.

Safety

Side Effect Prevention

Satisfaction

Like I said, I’m satisfied with her, and she’s a good doctor. She recommended that after seven years, and I changed my medication due to a—that it would take effect on my kidneys after so long. She did switch my medication with my permission.

Satisfaction

…they just switched my medicine cuz they said I’ve been on the other one too long, and I think it had just something to do with my bones. It made them brittle cuz they said I’ve got osteoporosis now.

Dissatisfaction

Even though the medicine is keeping us alive, there’s still drawbacks to it. It affects our liver, it affects our kidneys. It affects our hearts. Just thinking about that … in and of itself has been a struggle...

Overmedication

Dissatisfaction

You wanna apply medication on top of medication, on top of medication. My pastor always told me, just cuz the doctor provide it to you don’t mean you have to take it.

Dissatisfaction

When I get ready to go pick up my meds, they done put some more. What is this for? I’ve already been on medicine for so long. Then you give me some more medicine. I’m like, ‘I’m not fit’n to take this cuz you prescribed it for me, and you gave it to me, but you didn’t inform me of it.

Timeliness

Care Wait Time

Satisfaction

…what I like about them, they don’t give everybody a 9:00 appointment. If I get there at 9:00, 9:05, they’re calling me... If your appointment is at …9:30, okay, at 9:35, I’m out that office at 9:35, and you’re walking in at 9:35. You’ll go walking in five minutes after the time you get there when you’re going to see a doctor because everybody don’t have a 9:00 appointment like they do here.

Dissatisfaction

The only problem I really have is when I go, and I got a 9:00 appointment, and then they don’t see me ‘til 10:30. Don’t give me no 9:00 appointment, cuz I’m expectin’ to see doctor at 9:00... I have other things to do, so [I] set aside this time to come see you.

General

…when I come there, I comin’ there get my medicine, you check me, let me know if anyhthing wrong me, and get me the hell outta there cuz I don’t like bein’ there no way… I don’t like bein’ where I know a lotta people. It just somethin’ about seein’ people where I go that does somethin’ to meYou know they talk.

  1. a Refers to patient care experience, categorized as greater satisfaction, dissatisfaction, or general (neither satisfaction or dissatisfaction)