Table 4.
Health-Care Management Challenges During the COVID-19 Pandemic
| Themes | Exemplar Quotes from Participants’ Interviews |
|---|---|
| Due to actions taken to prevent exposure to COVID-19 | |
| Preventing exposure to COVID-19 stopped patients from entering medical and public spaces. | “Staying out of the public realm so as not to catch the sickness, deciding to go into the doctor or stay home and just call, going and get my shots at a place that I can trust. I recently had a terrible experience at CVS waiting for a shingle shot, and it made me walk out without it because their place where they administer the shots was filthy and obviously hadn't been cared for, sanitized, wiped down or anything … I'm just afraid to go back to that drugstore.” – Transplant Patient 25 |
| Preventing exposure to COVID-19 led to postponed medical visits. | “So, I see my transplant center about 3 times a year, 3 to 4 times a year … They wanted to see me and then I was like, ‘No. I’m not coming in.’ And then I was going to push it off again and they’re like, ‘no. You haven’t gotten bloodwork since February. You have to get your blood work done.’ And you have to do a telehealth appointment because that’s like the longest I went without seeing them. Or getting bloodwork done.” - Transplant Patient 15 |
| Preventing exposure to COVID-19 affected accessibility of getting medication. | “… every time my daughter has to go to Rite Aid. She's getting exposed. And she's about as panicked as I am about exposure. So, you know this it's, it's, it's crazy. I'm thinking maybe I'm going to try and do apparently CVS will actually mail the drugs to you.” - Transplant Patient 41 |
| Due to lack of resources or support from the health-care community | |
| Difficulty receiving up-to-date, patient-focused health education or information. | “The reason why I called - the number wasn't to participate in the survey, but rather to get some more information about how to communicate to my doctors and my transplant team that I need some help getting reasonable accommodations. My employer, because I'm a high school teacher, so it's like a very high-risk environment. And I just found out about the survey that way, and it made sense to me that, like, I'm spending, I'm spending all this time trying to get these resources and trying to find out this information. And there are lots of transplant patients out there who are also probably in a similar boat and need, you know, we need to kind of advocate for ourselves” - Transplant Patient 1022 |
| Challenges receiving health care during COVID-19 | |
| Difficulty working within telehealth platforms | “I’m kind of forced to do the telehealth because that's the way they would rather do it. But I missed the face-to-face interaction. So, I would hope that someday we can get back to actually sitting face to face with your doctor, because that's a little more, that appeals to me a little more than talking to a computer screen.” - Transplant Patient 430 |
| Delays in appointments and not being able to see their doctor in a timely fashion. | “But I think overall, I think some of it is the fact that, you know, being a transplant recipient and not being able to get to my doctors in a timely fashion, have been a struggle …” - Transplant Patient 2 |
| Delays in getting a kidney transplant. | “And I'm still waiting to hear from the pretransplant unit whether I've been accepted into the new program or not. And when I call, they just say that, ‘We're really backed up because of COVID,’ but nobody's giving me a clear-cut answer. Did you get my referral? Like, am I in the system? Like, I have living donors that are willing and asking me questions, but I can't give them any answers to the questions they're asking because nobody is telling me whether they got the referral and they just say, ‘We're really backlogged.’ Like, we'll get to you eventually.” - Transplant Patient 84 |
| Difficulty receiving dialysis supplies. | “[My dialysis supply company] are not delivering my actual supplies, they're not putting it upstairs in like the room that we originally designated. And it's hard to get like these boxes of fluid upstairs. So, they you know, all today because of COVID … And sometimes I have like, over 20 boxes to get upstairs and it's really hard. You know, to get those–to get these heavy boxes upstairs. So, I just wish, I mean. I mean, I know they're trying to protect their drivers, but I just wish they would find like another alternative.” - Dialysis Patient 19 |
Abbreviation: COVID-19, coronavirus disease 2019.