Table 2.

Illustrative quotations from concept elicitation interview participants

Themes and subthemes with supporting quotations
Feeling boxed in by the system
Checking task-oriented boxes
Care Partner: ‘The team meetings are just a walk-through to check off the boxes, because Medicare probably requires it quarterly’.
Nurse: ‘…it's just the same routine thing over and over and over and not necessarily getting anywhere. It's more just check the boxes…I don't think [patients] look at it as a way for them to let me know really what's going on’.
Medical provider: ‘I think it’s artificial, contrived, ineffective most of the time; more about dotting ‘I's’ than it is actual care planning’.
Surrendering to the weight of the system
Patient: ‘I don’t ask for nothing, and I just come in, try to do this, get it out of the way and get out of here’.
Nurse: ‘It's like we do [individualize care], and then it just kind of dwindles back down to those rigid guidelines because we lose that personal touch. Over time you have so many people, and it's just a rush and it's what we have to get to’.
Social worker: ‘I do feel like we often rush through the care plan to get through the requirement. I think we often just lose over time—just kind of with anything—you lose the value of why care plans are important, and your main focus is to get in compliance’.
Medical provider: ‘… we have to do things a certain way, you know, and there’s protocols and there’s standards and there’s research and formulas as to why we do it this way…it just sometimes feels like you’re just slapping [the patient] on the hand with a ruler, like back away now… this is ours. And you feel like you’re practicing this very paternalistic form of medicine’.
Being influenced by historical experiences
Patient: ‘I just keep it to myself, because [the care team is] not really going to put forth an effort to fix none of it, and I don’t like to waste my time’.
Care partner: ‘I did not bring my ambitious self to the [recent care plan] meeting because I didn’t feel there was anything that happened after the last [care plan] meeting’.
Social worker: ‘… if it’s something [patients] feel like they asked for before and it hasn’t been honored or if patients get fussed at too much. It just depends on…the history of what’s happened with the team and how well-supported [patients] feel’.
Navigating dual lives
Experiencing isolation
Patient: ‘Sometimes it’s hard to explain to family what you’re really going through because they’re not here’.
Care partner: ‘He was used to working, and mingling, and having friends in different areas. But he’s not able to do that no more, and I think that that might have something to do with that feeling of [not having] self-worth’.
Making trade-offs
Patient: ‘It’s not so much dialysis get in the way, it’s the effects of dialysis…Because you never know, sometimes you may plan something but then the next day you’re just not feeling well so you may have to cancel your plans or rearrange things in your schedule’.
Social worker: ‘A [patient] said, I just want to try to reduce my treatment time to see if that’ll let me be able to cook more and be with my family more. So we looked at that goal and tried to figure out what we could do, and reduced her time, and now she’s feeling better, but she’s not meeting clinical guidelines. But she’s happier…it’s stressful for the [care] team’.
Acknowledging an evolving identity
Patient: ‘I don't go like I used to. I just sit at home more, and I don't do nothing, really. Well, I used to be a busy body going all the time, but I just sit at home now’.
Nurse: ‘I don't think people really know who they are. They kind of lose that because they're so busy just trying to survive day-to-day with following the diet and getting their treatment and taking their medicine and that sort of thing … so they lose that interest, like knitting or whatever they might want to do’.
Respecting the individual as a whole person
Patient: ‘[It] was like you just some number, you know, like you—kind of like cattle, and get through your little assessment and then go onto the next person’.
Patient: ‘Well, I think it’s two-fold. I think the medical care of dialysis, the treatments are good, and I think the personal is also good. I think it has to be intertwined, you know… to meet the goals of the total person?’
Nurse: ‘…it would be nice for the patient to know that we take interest in them as a person versus a patient’.
Medical provider: ‘If I would just look at dialysis care, it’s just going to be looking at those [quantitative] parameters. If I look at the patient as a whole, you start looking at other sort of parameters, as well…I think that would be looking at the patient instead of just looking at dialysis’.
Increasing individualization to enhance care
Patient: ‘The more [the care team] knows, the more the care plans are individually catered to each patient, because everybody’s different, although the goals may be the same, but it may be different how you attain those goals’.
Nurse: ‘I feel that if anybody—anybody, not just the patient, but if you recognize that I'm taking a personal interest in you, you're going to be more willing to open up to me, to talk to me, and maybe come to me whenever you feel like you need help or to share an accomplishment’.
Medical provider: ‘I think that we should be incorporating patients’ goals into their care, and I think we need to come up with a way to sort of measure that and make sure that they’re moving forward in it, just like we do phosphorous’.