Table 5.

Illustrative quotations by patients, informal caregivers, and dialysis staff

Themes	Quotations
Patient challenges to home dialysis
Need for sterility	“… you have to be very sanitary on everything you’re doing. Everything has to be hospital clean. I mean, it’s not a massive challenge, but it’s something that you have to pay attention to, because the repercussions of not doing that, not being careful in what you’re doing, not doing everything in a very sanitary measure are uh, very serious.” 73-year-old male on home peritoneal dialysis “You have to make sure you have your mask on. You have to make sure that your hands are thoroughly, thoroughly clean. Uh, making sure that after you wash your hands if you touch something, again, you have to wash your hands. The cleanliness is extremely, extremely important.” 70-year-old female caregiver/patient spouse “If they are going to do the dialysis at home overall you want them to have sanitary living environment. I know our team looks to see if they have any pets. Especially cats with all of the supplies involved. They do the home visit to see if it is free of clutter.” Dietician
Burden of home dialysis tasks	“The boxes, boxes that come in of the dialysis solution. Got to find a place to put all of them, and it’s not just the solution… Got to have room to do all the, keep all of the extra equipment.” 76-year-old male on home peritoneal dialysis “The machine, when the cartridges aren’t any good, or the machine malfunctions, or the catheter breaks. We have sleepless nights.“ 58-year-old female caregiver/patient spouse “Like PD initially they are very happy but the longer they are on it, they seem to become much more unhappy. I think they just get tired of doing it every day.” Nurse
Insufficient self-efficacy	“There are a lot of our patients who just the idea of doing something like dialysis themselves scares them. I think if they don’t know or are aware of it to doing medical procedures. They think the medical procedure should be done by a nurse or a doctor in the hospital or a center or something like that.” Physician
Lack of suitable home environment	“It’s just, the only thing is that people need decent insulation and central heat and air so that they can provide a controlled storage and temperature for their solutions.” 72-year-old male on home peritoneal dialysis “…and another disadvantage is because we are in a rural area, we just went through this last week, power outages out here are quite frequent... Um, for an example last week we were out 36 hours and doing manual dialysis in candlelight. Brought a whole new level of fear and anxiety on both of us.” 57-year-old female caregiver/patient spouse “I often will start first with my contraindications for dialysis, home dialysis. Because, do they have a stable home situation? If they don’t, how are they going to store the supplies? How are they going to do it daily?” Physician
Physical side effects of home dialysis	“The only thing I don’t like is that you can’t really sleep. So, it messes you up for actually trying to get a job and work a job because you don’t really sleep. When you hook up the machine you have a beep for some reason or another and you’ve got to wake up and reposition yourself or check the lock out, and I don’t sleep in one position, so that’s a problem.” 62-year-old male on home peritoneal dialysis “Yep, migration of the coil, and developing hernias, that was probably the two biggest things for us.” 68-year-old female caregiver/patient spouse “There was one other gentleman he just could not get used to the thought of, he could not sleep at night with the machine. Anytime an alarm went off at night he would be just up the whole night. It was making him very, very uneasy.” Physician
Negative psychosocial effects of home dialysis	“So, uh, you know, you’re probably, your mind probably isn’t as much at rest as it was when you weren’t on something like this, because you have to be attentive to what you’re doing. You have to be concerned about your fluid intakes. You have to be concerned about your blood pressure and your weight, and, uh, you know, these tax your mind.” 73-year-old male on home peritoneal dialysis “Well, I know he mentioned yesterday, in his viewpoint it’s a disadvantage just to have a catheter sticking out your body, and I can only imagine.” 60-year-old female caregiver/patient spouse “Some of them burn out because there is a lot of work at home.” Physician
Loss of freedom	“With home dialysis you have all your day free, and before you go to bed, before you hook up, your night’s not free. So, if you want to see a night movie, you can’t. If you wanted to see a movie at 7:00 and it gets out at 9:00, if you want to suffer staying in bed until like 8:00 in the morning while you’re still doing your dialysis, you can’t. Like, I want to go see the high school football team. I have to leave at half time because that’s at 8:00, and I have to come here, because it takes an hour to set up the machine, the tests, all of the cassettes, and everything, and by the time you wake up it’s 9:30. I can’t do that, so I only see half the game.” 50-year-old male on home peritoneal dialysis “It limits being able to go out and enjoy certain activities, because it’s like, you have to come back home, do your next treatment.” Female caregiver/daughter of patient “I think that you have some people who say I don’t want to do it every night. For the peritoneal dialysis, I don’t want to be attached to a machine. At night I want to get out. I want to move around.” Physician
Geographical barriers	“Challenges are that we do have a lot of patients that live in rural areas. They don’t want to come here because some of them are having to drive 4 hours to get here for clinic.” Nurse
Diminished peer socialization	“I think some of the guys that are in-center enjoy the social aspect of it. I think some people revel in that. Being able to sit around and talk to the guys that are going through the same thing they did and they are still talking about the wars and the service and all that. I think that that kind of personality likes that kind of group kind of thing.” Nurse
Challenging health status	“You also have patients who for some reason or another their body isn’t working with peritoneal dialysis. They had multiple abdominal surgeries, or hernias, it just doesn’t work for them. In that case in-hemo is the way. It just depends on the patient.” Dietician
Patient facilitators to home dialysis
Convenience	“If I have to get up at 6:00 and be somewhere at 7:00 in the morning. I’ll just start a little earlier. I’ll start at 7:30 or 8:00 in the evening and then that way I’m up in the morning. If I have somewhere to go at night and I don’t get on the machine until midnight or after then I just sleep in the next morning, and um, stay in bed basically until it’s finished. It’s not a big deal.” 58-year-old male on peritoneal dialysis “Not having to go to another facility to have the dialysis done. You’re able to stay in your own home and manage your dialysis on your own time” 68-year-old female caregiver/patient spouse “For the guys who are able to do in their home, it seems to be much better. They have a better quality of life. They don’t have to come in every other day and stay here for a few hours. As long as they have that system at home they seem to do very well.” Dietician
Home comfort	“I can do it at home in my own privacy and relax.” 62-year-old male on home peritoneal dialysis “I think it’s great. I think it’s wonderful. It’s like, less invasive of your privacy and your time.” 61-year-old female caregiver/spouse
Freedom	“The freedom that it allows me to do all my activities and stuff like that. I can do dialysis at night and then venture out during the daytime and do whatever I need to do.” 71-year-old male on home peritoneal dialysis “It’s something that can be done at home in your own time, and it also benefits us in being able to have a quality of life with traveling or, um, basically with travelling.” 75-year-old female caregiver/patient spouse “One of the factors would be the time they would have available during the day. Do the treatments at night. Helps them carry on with their routines better. That they only have to come once a month. Minimizing the visits, that really helps them. Giving them the flexibility to do what they want to do.” Physician
Avoidance of in-center hemodialysis	“I don’t like playing with blood, and with the hemodialysis it filters the blood. It takes the blood out of the body and filters it and puts it back in. I ain’t too hip with that. So, I chose peritoneal because I thought it was a lot easier and safer for me” 62-year-old male on home peritoneal dialysis “I was looking up, um, it looked to me like there was more cardiac events in the chair than there are in peritoneal dialysis.” 60-year-old female caregiver/patient spouse “I think just the thoughts of being tied to a machine three times a week is overwhelming. Kind of like thinking you have to go to the dentist three times a week, and that is only an hour. I just think that they like being on their own.” Physician
Preservation of autonomy	“Well, there was also the idea, I wanted to control my own disease and peritoneal gave me that freedom to do things, and to do it at home, and to do it on my own.” 67-year-old male on home hemodialysis “The disease is less scary when you have more control over it. There’s a lot of fear in putting your whole life in someone else’s hands.” 50-year-old female caregiver/patient spouse “I pretty much like to start all my patients with CKD 5 on home modality of any kind. It gives them a lot of control over CKD, such a debilitating disease, and a big sense of that is the patient has, is they lose control of their life. It gives them a sense of control to participate in their own chores. They do a better job of it. I ask them, the one question I ask them is who do you think will be invested in your care better than you?” Physician
Adequate support	“Their communication level is excellent. Like I said, I can call them anytime, and then if there’s a problem during the night, there’s a peritoneal dialysis nurse on staff at the VA, so I can call in if there’s something like that. Also, the company Baxter has a 24-hour line of course.” 45-year-old male on home peritoneal dialysis “You know, if you get down and out, you know, ‘I don’t want to do this,’ you know, they’re always behind you. If you have a question you can always call them. Sometimes I’ll call them and say, ‘Am I doing this right?’ You know, ‘Should the yellow be attached to the blue?’ No question is ever too small.” 64-year-old female caregiver/spouse “We actually have a patient that has been successful using peritoneal dialysis for quite some time come in. Talk about it. Show his catheter placement in his stomach. Allow patients to ask questions of him. I have sat there before and that is pretty powerful because it instills hope.” Social worker
Adequate training and resources	“They should have all of the pamphlets they gave me and keep reading everything that you can get your hands on and go online also. Online was very helpful to me. It gives you a better perspective of how the treatments are treating other people, you know, it’s not going to work for everybody but, you’ve got to try it. You’ve got to investigate it.” 71-year-old male on home peritoneal dialysis “I have to credit that to the nurses. They are very good. They don’t rush the training for our patients. I know a lot of places will do it in a week and you are done. If the patient is not ready we take our time with the patient and train. I will see them when they are training. Look at their labs and blah blah blah and look at the patient and make sure they don’t need to be pushed harder. They really do take their time with the patient. They don’t send them home before they know that they are ready.” Physician
Physical and cognitive skills for home dialysis	“You’ve got to be able to keep inventory, you have to, you know, have a clear mind when it comes to recording your figures, keeping a log on your blood pressure and your weight. You have to keep a log on your, you have to pay attention very closely to your medications, and uh, the routine that you use in taking your meds. You’ve got to pay very close attention to the fluids you’re retaining or not retaining. You’ve got to pay very close attention to dehydration or hydration. So, I would say that you would at least have to have an average IQ to do this. I mean I wouldn’t even attempt this thing if I wasn’t somewhat in control of my thoughts.” 73-year-old male on home peritoneal dialysis “First thing is, patient’s IQ. I mean, does he understand? How well does he understand? Then, clinical factors. We have peritoneal dialysis nurse assess him for dexterity and that. Can he make the connection physically to see if he can do it?” Physician
Favorable disposition	“You have to be responsible. You have to follow the rules.” 50-year-old male on home peritoneal dialysis “Also, I think with the home dialysis, um, to be able, for the family to be able to monitor the patient, however, I wouldn’t suggest, um, if the patients are less alert to do it.” Female caregiver/daughter of patient “I think that somebody has to have pretty full cognition to do it in the home environment. They have to be rather kempt, so they don’t promote any infections with themselves… Then motivation to accomplish the treatment. Obviously if you have somebody that is not motivated to be compliant and they are left on their own for a month at a time that can have pretty negative consequences.” Social worker
Perceptions of improved health	“I feel a ton better. I have more energy. My mind is working. I had actually gotten to the stage where I was getting cloudy in my brain. I call it cloudy, and my brain wasn’t actually working right, and so, when I went on dialysis that all got better. I had a lot more energy.” 71-year-old male on home peritoneal dialysis “The patient feels better because they’re being dialyzed on a daily basis. Um, there’s not a lot of discomfort with it. There’s some cramping sometimes, but mostly my partner feels much better being able to dialyze on a daily basis.” 68-year-old female caregiver/patient spouse “For the guys who are able to do in their home, it seems to be much better. They have a better quality of life. They don’t have to come in every other day and stay here for a few hours. As long as they have that system at home they seem to do very well.” Dietician
User-friendly procedure/ technology	“I really feel that the way that the machine’s set up, it makes it easy for just about anybody to do this.” 58-year-old male on home peritoneal dialysis
Recommendations for implementation of home dialysis
Incorporate mental health care	“I would think people who were on dialysis need some kind of psychological help, because you realize that you are not going to be able to do anything else, ever. This is it from now on, and you start to get depressed. So, I would like to see somebody come up with some psychological help.” 70-year-old male on home peritoneal dialysis “I think maybe sometimes they need somebody to talk to other than, um, other than the medical support that he gets. I think mentally they need somebody to talk to. You’re doing home dialysis. You can’t work. So, I think they need some type of stress relief, also. If they could talk or rant and do whatever they need to do. It’s very hard for him, because if they don’t have the support to do that then of course the caretaker has to deal with it. So, I think they need mental counseling to help them accept and deal with the fact that they’re doing home dialysis.” 58-year-old female caregiver/patient spouse “I would encourage the social worker to work alongside the nurse in the community and do the home visits and do the caregiver supports and assessments in that natural environment. Rather than making them come to the facility. That takes time. Then on top of that, I would want to have that roll be a little more clinical where they do the KDQOLs, and tend to look at depressions. Maybe do a depression inventory or anxiety inventory and look at adjustment issues to having a chronic illness that is end stage and maybe doing a little counseling on top of that.” Social worker
Offer peer-to-peer coaching	“I think that would be, if somebody had the option ahead of time of calling somebody and talking to somebody who’s actually doing it, sometimes that might help them feel better about doing it.” 58-year-old male on home peritoneal dialysis “I think, making, or having the guys, or whoever is doing it, just talk about it every once in a while to see how it goes for each of them, and that kind of thing, but that’s it. Group support.” 56-year-old female caregiver/patient spouse “I also think that during those proactive times there could be some type of mentorship program. Where there are probably Veterans out there that are very strongly aligned with their peritoneal dialysis and are giving and want to show somebody exactly what that looks like beyond coming to the CKD class.” Social worker
Increase frequency of home visits	“I think for some of the older patients that had trouble with it, they should probably do, uh, come and check the house every 6 months, maybe.” 45-year-old male on home peritoneal dialysis “It would be helpful to have a professional provider that you know, attached to the hospital, there at least for the first two treatments.” Female caregiver/daughter of patient “I think it would have been better if we could have had the social work roll going and doing home visits maybe on the off months that the nurse wasn’t going, just to kind of look for things that the nurses weren’t looking for.” Social worker
Decrease patient burden	“The only way it would be easier is if it worked better and that would be a shorter period of time.” 71-year-old male on home peritoneal dialysis “Some type of benefits, medical supplies. Something that can make him comfortable at home, like a nice pillow, something like a complimentary support for them.” Female caregiver/daughter of patient “So, I think the main way you can think about them coming to the VA is if we could start doing more telemedicine and decrease the monthly visits. Just have a connection and their relationship that maybe they only need to see us quarterly.” Physician
Improve functionality of equipment	“We’ve had problems with the Baxter machines. We’ve had to exchange the machines three times now. The old machine, the first machine was a big bulky thing and it was dated, you could tell, but it worked fairly well. Then, they went to this new, smaller machine that’s supposed to be all updated and great, and all this stuff. Well, so far they’re still working on it. They um, they have a lot of alerts you know where middle of the night a big alarm will go off and it will say many things, like the flow is slow, or that uh, cassette failed, or things like that now.” 70-year-old male on home peritoneal dialysis
Enhance support for caregivers	“Well, I mean it’s, it is really stressful on her. I’d like to have her be able to talk to somebody about what’s going on. She needs psychological help also, because this is very, very difficult for her. You know, the joke of death is nature’s way of telling you to slow down. She’s worried I’m going to die. If I sleep past 9:00 in the morning, which is very, very seldom. I slept until 10:00 about a week ago, she tiptoed into the room to see if I was dead. Can you imagine the stress? I wish there was somebody that she can go talk to, somebody that understands what dialysis is and what the affect is on the caregivers. I will tell you, it is killing her. I mean she is just miserable, and I can’t say, honey, it’s going to be ok, because it’s not going to be ok. It’s going to be this way forever. So, I mean she’s worried about me dying, and I’m not. If I die, I die. I’ll never know it, but she has to do that every morning. Amazing, and I don’t know if this will help at all, but you need to get somebody to help her, help all these caregivers.” 70-year-old male on home peritoneal dialysis “Um, I hate to say this because this sounds so horrible, but some financial aid. I mean, with me giving up my work that I did 12 years ago. We just live off his [unclear], and God forbid when the time comes, there’s really nothing for me, except the little limited that the VA gives me. I think the benefits get cut in half. Yeah so, unfortunately, I could start crying. I know that’s a very stressful thing because we talk about it a lot, because if I wasn’t here and he would have to pay for somebody, there’s no way that he could pay the little bit that they give us. So, it would be nice to have some kind of compensation.” 57-year-old female caregiver/spouse of patient
Seek continuity with physicians	“To be perfectly honest with you, and I’m sure there’s a reason that they can’t do it, but you would be better off with assigned a particular doctor opposed to five doctors rotating your visits. Only because, each one of those doctors has their own approach and their own opinion on your dialysis, on your medication and on your treatment, and, and, it can be, it can be, that can be a problem, because you’re constantly flip-flopping on medications, and flip-flopping on your dialysis solution prescriptions.” 73-year-old male on home peritoneal dialysis “I think another thing that is a little confusing for the peritoneal dialysis folks as a whole is that here at least at our VA, our physicians change. So, depending on the month, each renal attending kind of does their practice a little different which makes a lot of sense. But every month the patients come back for an appointment and they are seeing a different provider. I feel that, that can be quite confusing. Obviously, folks have preference. They might prefer one over somebody else for various reasons. That is tough for us as like the support staff that is here all of the time. Myself, the pharmacist, dietician, nurse. It is kind of hard. We even have to change it up. But for the patients I could imagine it is more confusing.” Social worker
Provide health data feedback	“You know what would help actually that we’re not getting, and this is not against the VA, it’s the computer system, the automated gizmo. It collects data every day, and it sends those data to the nurses, and they have those data, and I don’t. I mean, when the machine is on, there’s a moment in the menu where you can actually click a menu and go off and look at data, but you’ve got to catch it at the right time. If my husband’s already cycling, I can’t go look. If it’s in the middle of the morning, and his feet are a little swollen and I’m like, ‘Well, how did things go last night?’ and he’s all, ‘I don’t remember the numbers exactly,’ I can’t just go turn it on quickly and grab the numbers and have some knowledge.” 60-year-old female caregiver/spouse of patient
Improve education	“Yeah, if I had a wish list it would definitely be, um, kind of more patient education that was kind of centralized, I think. Or a database I could pull from, because right now I just do web searches for everything to do my education.” Nurse

KDQOL, Kidney Disease Quality of Life; VA, Veterans Affairs.