Table 2

Illustrative quotations translated from original Italian language to illustrate themes*

ThemesQuotations (English)
Flexibility and freedom
 Increased autonomy“Just to avoid having to come here [in the clinic], and not to have a time restrictions. On reflection, doing home haemodialysis, I could manage my time as I prefer.” (47M Patient)
“I think, I don't know if it's possible, that you can do dialysis while you are at home and have nothing else to do, and for someone who has a job this is absolutely the best solution. If I’ m busy during the morning I will not do dialysis in the morning but I can do dialysis at lunch time, rather than lose an opportunity to work in the morning. On the contrary, here [in the clinic] I cannot say ‘I'm busy today, I will come for dialysis in the afternoon or this evening.” (51M Patient)
“I welcome home haemodialysis, because I think that is very good for young people. You can manage better your things; it gives more freedom, not only time. You can decide to do 6 or 8 hours of dialysis, connecting at midnight and disconnecting at 6 in the morning and go to work.” (41M Patient)
 Minimise wasted time“The time I waste having to come here in the dialysis clinic, the waiting time [before you can start dialysis.]” (63M Patient)
“Sometimes you have to wait half an hour, even longer before you start dialysis, say at night, to be connected to the monitor. The driver comes to pick me up at 5.10 or 5:15 and I'm connected at 6.45...then I come home late at night.” (64M Patient)
“Someone who does dialysis wants to go home quickly, they don't want to wait. My husband [doing in-centre haemodialysis] wants to go home immediately, he does not want to wait. He does not want to wait half an hour, 5 minutes are fine, but no more. Sometimes they have wait until it is decided which driver they will go back home with, whether it is this car or the other car. 20 minutes is too much.” (78F Caregiver)
“At home he is in his environment, he does not have to wait, that's the thing; that he should not have to wait for dialysis.” (79F Caregiver)
 Liberation from strict dialysis schedules“The only advantage that I can see is psychological. I will not be in a hurry to get ready in the morning. I can be more comfortable with my own timetable.” (49M Patient)
“At home he is in his environment, he does not have to wait, that's the thing; that he should not have to wait for dialysis.” (79F Caregiver)
“You are not mentally obliged to come here [in the clinic] in the morning…you feel psychologically freer.” (64M Patient)
“Autonomy is very important for him because he can decide to do dialysis when it is most convenient for him...he can decide independently. It is really for him, for our family it is OK, we have made arrangements. He is the one who has this need for more flexibility in shifts, for him this is a very limiting issue that he has to come here during those 3 days at a specific hour.” (47F Caregiver)
 Gaining self-worth“My work is the only income to support my family, because I am a husband and a father and I must take care of my family, I wish they are always fine. So I am the only person in charge. If I should die, I am worried about this, and this makes me feel nervous, of course…because when you no longer have a good income, you cannot buy what is needed [for the family].” (51M Patient)
Comfort in familiar surroundings
 Family presence and support“The comfort to be at home, being close to your family, and if you do not feel well they take care of you…I must confess that when my wife comes in the clinic, and she comes often, I am really happy.” (51M Patient)
“These family moments, this extra time you can spend with family. Doing it at home for her would be like a game because living with my children she would play with my son, with my daughter. If someone buzzes at the door, she can ask you who it is. Then if the phone rings she can spend time with someone on the phone. She sometimes carries a mobile phone here in the clinic so she can chat with someone, that's how she spends her time.” (40F Caregiver)
“For her stay at home, in her environment, is everything to her. For her to go away from home is torture...I do not know the right words to express this feeling she has.” (52F Caregiver)
“And then, if he is with his family most of the time, he is more serene, even psychologically. For him it is not so much the physical pain or what we say, the dialysis, the issue is he does not want to be away from home.” (47F Caregiver)
 Avoid hospitalisation“You'd feel freer I think, staying at home, in your environment where you live. While now you are in an environment where you see other sick people. Your frame of mind is much better [at home].” (50M Patient)
“You are on your own bed, no contact with other people; you don't have to see the other's sickness, which makes you think of your own sickness, and magnifies it.” (76M Patient)
Altruistic motivation“Thinking also of other patients who are my friends in dialysis, young or old people; I'm inclined to do a thing like that [home haemodialysis] for them. Why not? It is a new experience, an experience of life. At least for once, we as patients will be actively involved. When I didn't have all these problems I worked in first aid, I like helping people…now I am in very bad health conditions, but I'd like to help other patients, not only for myself.” (41M Patient)
“The future of dialysis is at home, and we will be the precursors, or at least we will spur the authorities to take in serious consideration the possibility to do HHD.” (76M Patient)
Disrupt sense of normality“Keeping the dialysis monitor at home would be a disadvantage. Because it would be a psychological burden, you know, to see the monitor each moment of the day in your home.” (65M Patient)
“I feel I am a free and normal man, but if I should have that machine at home, it wouldn't be the same, I'd always remember my sickness.” (29M Patient)
Family burden
 An onerous responsibility“This [in-center haemodialysis] seems to have the lowest impact on my life, on my family members, and have the greatest return in terms of benefit and cost of living….Should I hold one of my family members to be with me 4 hours a day? Absolutely no.” (48M Patient)
“Second, I would enslave my family for at least 4 hours, 4 hours next to a machine.” (48M Patient)
“I cannot oblige a person, no matter how much she loves me, and I love her, to force her to stay with me during the treatment. If I could do it alone, ok. But I can't stand to have a person make a sacrifice for me.” (49M Patient)
“My wife, my daughter should learn, but they are not always available, they work all the day. You need a person at home with you, always.” (62M Patient)
“Because if he does [dialysis] at home then I cannot even go out because I have to be following him.” (60F Caregiver)
“The caregiver, who does not have your disease, all the sudden has to take this burden as their own. You involve him in an incredible way; you make him bear your disease.” (49M Patient)
“I do not have time to do it because I've got many other things to do.” (48M Caregiver)
“It takes a lot of patience because you should devote one day, a bad day, with him, I should always be with him...I should leave my job, there are reasons which would not allow me to do this.” (62F Caregiver)
“It is like I said, it is an issue of caregiver competence, an issue of professionalism. My husband always tells me that in the dialysis unit, they monitor blood pressure constantly. If there are issues they immediately act upon them. How could I do this? I would be very scared, I would feel like I have the burden of a big responsibility.” (62F Caregiver)
“I cannot stand seeing someone suffer.” (62F Caregiver).
 Caregiver uncertainty and panic“No absolutely not. I'm already shaking.” (40F Caregiver)
“I am a very apprehensive, anxious, I'm afraid to make mistakes so I would be very scared to make mistakes and not understand things.” (62F Caregiver)
“In the event of complications, I am powerless. I cannot do anything. I do not have the training of a nurse or a doctor, so if anything should happen, any complications, I wouldn't know what to do.” (64F Caregiver)
“Something could happen and I would be panicking.” (49M Caregiver)
“First, because when someone does a dialysis treatment, they need to have a trained professional person near them.” (64 F Caregiver)
“[Home haemodialysis] makes no sense to me because it takes a lot of expertise. Also because of my husband's nature, we would end up arguing all the time because he is suspicious of people, my husband would blame me if I could not handle it well at home. He always fears others will do the wrong thing.” (62F Caregiver)
“First thing I said honestly, was I will never put those needles in your arm! (48F Caregiver)
 Visually confronting“When a small child only sees you connected to the machine with the needles, how can you explain it? I don't like it, it is too traumatic.” (34F Patient)
“My wife and my daughter faint at the sight of blood.” (48M patient)
Housing constraints“I don't like to have to limit the space in my house.” (48M Patient)
“You should make the room available for the machine, the supplies…it can't be at home.” (76F Patient)
“I haven't got the room, how can I do? You must have a bed for the treatment, how can I do? (59M Patient)
“It is a structural problem. If you live in a rental apartment you cannot make all these modifications to the house, even if small, for piping, etc.” (50M Patient)
“I have not got a sterile room. You need a clean room [for home haemodialysis]. You need to put the machine, the appropriate bed.” (65F Caregiver)
“It would be a hassle for me as well. You have to change the house, I should have to redo piping. tubing, facilities.” (56M Caregiver)
“You need a big house, a room only for you. Other people [in the family] cannot enter in that room while you have your things there. Moreover, I have a dog at my place! (58F Patient)
“There may be technical problems, such as the dialysis machine, for example the electricity goes off, I mean, while he is doing dialysis, what can I do? The thing is I do not have an electricity generator set.” (70F Caregiver)
Healthcare by ‘professionals’ not ‘amateurs’
 Relinquishing security“It is a question of safety. Here I have long term specialized doctors and paramedics who have years or decades of experience, which would certainly not be reproducible at home. If an emergency happens, here the staff are well trained. They don't need someone to tell them what to do, they do not panic.” (49M Patient)
“There are always risks, there may be risks even here, but here I can feel more confident. I've got service, there are doctors and nurses. They know exactly what to do in case of bleeding for example, but at home, I would know what to do but I haven't all the supplies. Here you have everything.” (76M Patient)
“At home you may be happier but all this fades when worries take over. The serenity of staying at home is over. If the caregiver can't come to help me for that treatment, what do I do? I will become worried, who should I call?” (49M Patient)
“Yes, yes. You know what? I am calmer, more serene, peaceful, because there are the doctors that if anything happens, they are already here. If he feels bad the doctors and nurses never leave him. That is a very different from home. At home I can leave, go to buy groceries, I find that is not impossible (47F Caregiver)
“I'm interested in security, specialization and the professionalism of a person who is putting his hands on a patient like this.” (47M Caregiver)
 Satisfaction with in-centre services“She is happy in the clinic compared to the hospital; because in the past two or three times we went to the hospital, we saw the difference, there is no comparison of the situation, the level of care here is really better.” (47M Caregiver
“This is his second home. They are exceptional. He calls [clinic staff] 'my angels’. We found a particular organization. So even if he had the benefits of a home dialysis, he would never accept that because he relies on all of them. He has that comforting, familiar atmosphere. They are all truly exceptional.” (62F Caregiver)
I am always anxious, however, I must say frankly that I am very happy with the care they provided here [in the clinic] and this makes me feel relaxed.” (71F Caregiver).
“In ten minutes it is here in the dialysis center. There's this perfect organization. Someone comes to take him and then drives him back home.” (63F Caregiver)
Isolation from peer support
“Because then it is true that you would stay home more comfortable, but you will feel even more abandoned! It is true that you are at home, but in the clinic at least you have people for 4 hours talking and smiling to you.” (47F Caregiver)
“Here, perhaps, one day he's got company. If you're at home it becomes more monotonous, you get nervous.” (56M Caregiver)
“Coming here in the clinic means the patient shares this condition of uneasiness with other people that suffer the same pathology—a trouble shared is a trouble halved. Here you don't get depressed, quite the opposite you can find more courage looking at how other people live your same experience. It gives you a reason to go out, to meet and chat with people, joke with nurses and doctors, instead of closing yourself in your house, and getting even more depressed.” (48M Patient)
“I think it is better in the clinic. In the clinic at least you have people who are like you, have the same problem, and you can share your feelings with other people because you can be sure that those people who have your same problem actually understand you.” (70F Caregiver)
  • *Quotations in original Italian language provided in online supplementary Digital Content 2.