Table 2.

Sample quotes from study participants

Themes and Exemplary Quotes
Theme 1: Adapting educational and patient engagement practices
Patient barriers to care
(1a) “Before the virus, I would go with her. Our children … were able to go with her for a couple of visits … get a tour, see what the equipment looks like.… It gave us a better feel for the home dialysis.” (Care partner 16)
(1b) “We have a dialysis modality teaching class that used to be in person, and it seems like that has fallen through the cracks somehow.… They've had some issues. I think people working from home on the administrative side, has allowed for things to fall through the cracks. There's a less in-person support.” (Clinician 7)
(1c) “I go to see the doctor by myself, or my husband and I go to the grocery store, and that's about it. [It makes me feel] more isolated.” (Patient 15)
(1d) “Since [COVID-19] started, [care partner] can no longer come in with me. He just drops me off and then picks me up at the end. I miss him being there.” (Patient 6)
(1e) “My oldest daughter, who lives five minutes away, she goes to the store for us. We don't have any contact with people.” (Patient 15)
(1f) “So, some of our patients didn't feel they even understood how to use the technology or didn't realize they could do phone visits until … I think some of our kidney patients ended up not following up with us for a few months. So, there was a few patients, we're talking about sort of negative side effects, there was a few patients who didn't have proper medical care because of the shutdown. And so, there were a few people who got hospitalized, they needed to start dialysis or things like that.” (Clinician 2)
New opportunities for telemedicine
(1g) “I actually prefer to do [telehealth] rather than have to hike up and go over to the medical center.… Obviously, it's much, much easier for me to send an email to my doctor and the next day I'll get a response for all of my doctors. So I really like it that way.” (Patient 15)
(1h) “No, there wasn’t anything that made it difficult. I was comfortable with it, I understood what the purpose was.” (Patient 14)
(1i) “If [I] wasn't there at the appointment, then I would worry if I remembered everything and did I tell her everything? It's sort of the same thing. So for the most part, they've been on the phone, which has been very helpful.” (Care partner 17)
(1j) “So what was relevant to telehealth sometimes, is that the patient might have a relative at home with them. And they also probably have access to the medications a little bit easier. So from that standpoint, the logistics of that is a lot easier.” (Clinician 7)
Theme 2: Reconceptualizing vulnerability and discussing it with patients
Clinicians awareness of illness severity increased
(2a) “During the period where it was bad, there was a lot of anxiety and doctors and patients worried about things, and physicians and nurses were concerned as well.” (Clinician 1)
(2b) “My dialysis shift was particularly hit hard … I take care of about 22 patients … nine of them contracted [COVID-19] and six of them died. It was very difficult for me … for the other patients … the nursing staff. We were woke to the reality that these are really sick people who are very vulnerable.” (Clinician 14)
(2c) “We had a nurse at the end of the hall dialyzing two [COVID-19] patients in their room at once … I was going there to provide moral support to the nurse.” (Clinician 6)
(2d) “[We were worried about] not [having] enough ventilators or dialysis machines or dialysis fluid, that [patients] might have to have unilateral DNRs based on the opinion of multiple doctors from different teams.” (Clinician 3)
(2e) “A big part of why it was so stressful is just the logistics of getting someone dialysis in a safe manner, that's safe for the patient as well as the nurse. And I guess ourselves too.” (Clinician 13)
Limited discussions about COVID-19 vulnerability
(2f) “Don’t walk around with doom and gloom on your shoulders. We’ll see how it goes and hopefully you don’t get it, but if you do, it’s not a death sentence. And that’s kind of been my approach.” (Clinician 3)
(2g) “It's hard to be on dialysis.… It's enough for [patients] to know they're high risk. I don't want to terrify them.” (Clinician 17)
(2h) “You have to be cognizant about what we're recommending … it has significant mental effects on our population, which is high risk for developing depression due their comorbidities.” (Clinician 4)
(2i) “I think [patients] … realize that there's not a lot of opportunity for them to do anything different.… They understand the risks … and that's pretty much the hands they're dealt.” (Clinician 17)
(2j) “[Clinicians] haven't told me anything to anybody about anything and they haven't told me about any [COVID-19 risks].” (Patient 29)
(2k) “I'm aware of my vulnerability … I am extremely careful about going out … I am being very cautious.” (Patient 20)
(2l) “I sort of keep back because I'm told I'm a high risk person because of age and because of dialysis, that I need to stay away from people. And so my husband and I pretty much stay right in the house.” (Patient 1)
(2m) “[I] know the risk [of COVID-19] just from reading the news and so forth.” (Patient 37)
(2n) “Before the doctor walks in, I've seen four people [in the nephrology clinic]. They've given me marching orders. Not one … has ever said a word to me about coronavirus. I've always wondered why.” (Patient 29)
(2o) “What effect would [COVID-19] have with [my] kidney disease?” (Patient 26)
(2p) “My doctor suggested that, unless I have an emergency, I stay away from the hospital … I appreciated it because I've always been the kind of person that went.” (Patient 22)
(2q) “They told me what to do and how to do it … that's what I do.” (Patient 2)
Theme 3: Embracing home-based dialysis but not conservative management
Openness to home-based dialysis
(3a) “There are changes related to the added risk of [infection at] in-center dialysis, and the realistic assessment of utility given the acute and serious medical condition. We probably are doing a better job of saying [in-center] is not a good idea to start. I think maybe there's also been a bit of a shift towards [home] dialysis as a result [of COVID-19].” (Clinician 1)
(3b) “The pandemic highlights the bad [of dialysis] because when patients ask about risks or benefit, I mention one benefit of being at home is that you don't have to go out three times a week and interact in a group setting.’” (Clinician 8)
(3c) “[COVID-19] has solidified my decision to avoid [in-center hemo and transplant].” (Patient 39)
Limited discussions of conservative management and advanced care planning
(3d) “I'm a huge fan of [discussing CM with patients] .… with or without [COVID-19], I’m not going to change [how I approach CM conversations].” (Clinician 3)
(3e) “[CM] is not the primary focus of [their] discussion. [Treatment] discussions haven't really changed…. [and] don't even mention [COVID-19].” (Clinician 6)
(3f) “I’m not sure if this is a manifestation of [COVID-19] or the way that our thinking is evolving, but CM is becoming more accepted viable option to present to patients.” (Clinician 12)
(3g) “I think that … COVID-19 … increase(s) the comfort level of people talking about what they want to do if [they] got really sick … it enables a better, easier, conversation. [Otherwise], it's really hard for them to make those decisions ahead of time.” (Clinician 10)
(3h) “We have [discussed advanced care planning] in the past, but not during this time now.” (Care partner 11)
Theme 4: Satisfaction and safety with treatment decisions under conditions of uncertainty
(4a) “There was no reason to [change treatment] at this point, nothing.” (Care partner 15)
(4b) “No, I don't think [COVID-19's] had an effect on my decision.” (Patient 3)
(4c) “From what he's read, there are more infections in the dialysis in-center. That's concerning to him, he would not want to go there because of that.” (Care partner 5)
(4d) “I was never afraid of getting infected at the center where I go. They're very careful … I would be just as prone to getting something at home. So, I did not consider [home dialysis].” (Patient 8)
(4e) “I'm really glad that I'm doing this at home where I can maintain my standard of sanitariness … I'm grateful for having made that choice even though COVID-19 hadn't been part of the discussion.” (Patient 15)
(4f) “I would have [chosen conservative management] today under the [COVID-19] restrictions; [it seems] difficult to do dialysis especially at treatment centers. [I] probably want to stay away from those places even more so today than before.” (Patient 37)

Each participant is assigned a random number for data safety purposes. COVID-19, coronavirus disease 2019; DNR, do not resuscitate; CM, conservative management.