Quotations from clinicians to illustrate each theme
| Themes | Quotations from participants in study |
|---|---|
| Structural barriers | |
| Ready access to in-centre dialysis | The transport is paid back by social security. It's easier for them to come to the centre. (Male nephrologist, 40s, France) |
| We have an in clinic environment more or less every 10 kilometres in capital cities and every 30 kilometres in rural areas…why should you buy additional equipment to comfort people to get treatment at home? … there is just simply no need to do it at home … (Female nephrologist, 40s, Germany) | |
| Inadequate housing | We have some patients with very precarious, fragile homes, shaky homes made of wood, not strong, and not hygienic. (Male nurse, 40s, Portugal) |
| I think it could be a problem for them to manage themselves if they have little space in their house to put the dialysis machine and especially if they are not the owner of their house … maybe the costs of the electricity or hydraulics. (Male nephrologist, 40s, Italy) | |
| It's very difficult to implement when you have limitations. Because you need the thing that … a lot of regions in Argentina don't have … good water. (Male nephrologist, 60s, Argentina) | |
| Unstable economic environment | For home haemodialysis in countries like Argentina, Chile, Uruguay, you have financial and economic limits. It's very expensive. The very big cost is around the machine, the dialysis machine and the water treatment. … In Argentina … and Brazil we re-use … the haemodialysis filters. In Chile and Uruguay and Brazil, they re-use … the blood line. (Male nephrologist, 60s, Argentina) |
| In my opinion today it's not a good [time] … because of the problem with the financial economic crisis. I don't know if it is more expensive but I would think so. (Male nephrologist, 40s, Portugal) | |
| Centre characteristics | |
| Alternative treatment options | At that time we had 15 patients on limited care, and among those, most of them did the treatment themselves. Two of them wanted to go home … that says something … 3 wanted to stay and didn't want the machine at home. (Male nephrologist, 50s, Sweden) |
| They started the home haemodialysis project and moved to the assisted, limited person assistance dialysis … some of them were completely autonomous, independent and they did dialysis by themselves … (Male nephrologist, 60s, Italy) | |
| Some patients don't want to waste time during the day so they go to the centre, after dinner, they start dialysis. Most of the time they do it themselves, and they have a nurse and a doctor nearby, and they will wake at 7 or 8 o'clock, they take a bath and they go. (Male nephrologist, 60s, Portugal) | |
| I think the other alternative maybe is peritoneal dialysis, which is in my opinion a better home dialysis. For the patients, it's much…easier. You can be at home by yourself doing it. I don't know if you can be at home by yourself doing home haemodialysis. (Male nephrologist, 40s, Portugal) | |
| Competing priorities | They prefer to come, to the centres in Portugal, we have comfortable, good centres. (Male nephrologist, 60s, Portugal) |
| We had a priority to set up extended dialysis with a nightshift dialysis… because…the patients wanted that. So that's what we've basically done the last two months and that means also that half of our clinics are not—I mean right now they're more recruiting for nocturnal dialysis rather than offering them additional options with a home haemodialysis. So we had two competing programs if you may say for younger patients. One was nocturnal dialysis and one was a peritoneal dialysis program where we doubled the numbers of our patients since January. (Female nephrologist, 40s, Germany) | |
| You need to have also good logistics and structure for [home haemodialysis] … you cannot just have one patient. It's very difficult to have something for very few patients so you need to have a centre or something in the region. (Male nephrologist, 50s, Sweden) | |
| Commercial interests | I think in terms of economics it's also better because it's a little cheaper at the beginning with no staff, no transportation. We can also save money without the staff. (Female nephrologist, 50s, Portugal) |
| If we send them to home dialysis, we miss [lose] patients from our centres. It's not the most important but it's important. Because there is an economic crisis, I don't want to see my friends, my colleagues have his contract terminated because of this [home haemodialysis] project. (Male nurse, 30s, France) | |
| If the patient goes to home dialysis the doctor might earn less money so if he does earn more with patients in the heavy [large] centres, the doctor might tell him to go in a heavy [large] centre more than home dialysis. (Male nephrologist, 40s, France) | |
| …perhaps, also because there is no incentive for personnel and for the organization to permit the diffusion of this type of [home haemo] dialysis K (Male nephrologist, 40s, Italy) | |
| So when there are no financial incentives to do home haemodialysis then people don't do it. So, people are not interested in spending €15,000 [on] the patient to set up the infrastructure…that is then only used by one patient. (Female nephrologist, 40s, Germany) | |
| For example, the biggest barrier to peritoneal dialysis is financial. Many doctors don't put patients on peritoneal dialysis because they think they can make money with haemo [dialysis]. (Male nephrologist, 50s, Sweden) | |
| Clinician responsibility and motivation | |
| Safety and security | For example, once he went to emergency unit and his wife never realised he was losing weight. He was seven kilograms overloaded, so he had 7 kilograms of water in his body and she never noticed that. So he could just have died because of this lack of follow up or whatever. (Female nurse, 30s, France) |
| I don't think that security of dialysis at home is the same as in the centres. In the centres we've got a lot of protocols… They are all alone. (Male nephrologist, 30s, France) | |
| I think it's not a good idea because today, there is an infection risk. They are not professionals at home…(Female nurse, 20s, France) | |
| There is no benefit to leave the patient at home and it is too risky to, too many risks. We have experience with peritoneal dialysis, [patients] who dialyse at home…all come back, with peritonitis, with infections. (Female nurse, 20s, France) | |
| There is not [an] immediate link with the doctor or a nurse if you suddenly have a problem. (Male nephrologist, 50s, Italy) | |
| Knowledge and awareness | I've been working here for 18 years and I've never really heard about that so I think it would be quite hard to start home dialysis for patients, here it's not really policy. (Male nurse, 40s, France) |
| So far there is no promotion, nobody knows about this so it would be a strategy to start in a good way and to put some new patients to home instead of in centre haemodialysis. (Male nephrologist, 60s, Italy) | |
| I would be really interested in hearing about the other countries and knowing really how it goes there… (Female nurse, 30s, France) | |
| Lifestyle benefits | It's a liberty for them to be treated at any time of the day, during the night, they can work and they can have other, family life, as normal as possible, that's the main benefit. He stays at home he doesn't have to travel, he can keep his job, continue, does dialysis when he has the time to do it so it can be in front of the television when he has food or whenever. (Male nephrologist, 50s, France) |
| Home dialysis, it's a beautiful thing because you could dialyse when you want, during the night during the day, you are home and you have no problem, you are at your house, that's the beautiful thing, after you've finished, you could eat, you don't travel [to the centre], it's a beautiful thing. (Male nurse, 50s) | |
| They will feel better …on long home haemodialysis… that is what I'm expecting. They will feel better; they will take less medication and so on, so they will be [healthier] … (Male nephrologist, 50s, Portugal) | |
| Professional development | I like new experiences. I think it is good for professional growth. (Female nephrologist, 50s, Italy) |
| I think it will be better for the patient and as a nurse I can do my work, my job better. (Male nurse, 40s, Portugal) | |
| Cultural apprehension | |
| Unrelenting imposition | There is one room in the house where there is the disease …. We create more problems in the relationship with the partner, who is in charge of dialysis, and sometimes the relationship becomes difficult and aggressive because of this and sometimes people can just divorce because of the dialysis problem. (Male nephrologist, 50s, France) |
| He didn't want to take the hospital home, doing home dialysis, he wanted the disease to stay at the hospital and home was home, no disease at home. (Male nurse, 40s, France) | |
| The patient just wants to come and to have the treatment and to go home and don't think about. Some of them don't want to think to have the machine in the home. You are with your disease all the time because you have that at home, and they say sometimes they want just to have the treatment and after… OK, I forget about it and I have my life like everybody else. (Female nurse, 30s, France) | |
| Carer burden | They [family carers] can't be imprisoned because the father needs a person by his side in dialysis. (Female nephrologist, 40s, Portugal) |
| If there [are] any problems and emergencies it's quite hard here for a nurse to take care of this, so at home, if there is no experience and the person is anxious and it's their relative it would be even harder. Because the patient could be the child the wife the husband it could be harder for them to deal with it. (Male nurse, 30s, France) | |
| Attachment to professionals | People are scared about these things, medical things that look more complicated. ‘I am a normal person I can't do this, I'm not able.’ So they are very resistant … (Male nephrologist, 60s, Italy) |
| I mean if you today go to the hair cutter, you want a certain level of care right…and so we are surrounded by the experiences that whenever we get a service … we're well taken care of. (Female nephrologist, 40s, Germany) | |
| The Portuguese don't like the responsibilities. I think the majority of patients want others to care [for them]. (Female nephrologist, 40s, Portugal) | |
| Traditionally, everybody is linked to the doctors, everything connected with health is linked to the doctor so it's difficult for the mind set to think about home [haemodialysis], being independent from the doctor. This is a tradition. It's always a problem of mind set; it's stronger in the south [of Italy]. (Male nephrologist, 60s, Italy) | |
| The patients that are very afraid of everything in the dialysis room, when an alarm of the machine calls, they get very, very scared so I think that at home they will be very scared, because they would [not] feel safe … (Female nephrologist, 40s, Italy) | |
| Our people are not so educated in health. They are very afraid of taking care of their own disease. (Female nephrologist, 50s, Italy) | |
| The low socio-economic level of the majority of patients—it's very difficult for them. Many people here don't know how to read… and it's very difficult for them to make the treatment. But I think the principal reason is they don't want to be responsible. (Female nephrologist, 40s, Portugal) | |
| Limited awareness | Maybe because of what we tell the patient when he first arrives here so we explain him all the possibilities but… might not talk about home dialysis enough. We don't give enough choice to the patient K (Female nurse, 40s, France) |
| We're obliged to offer them three modalities like haemodialysis, peritoneal dialysis and pre-emptive transplantation…and home haemodialysis … is not promoted in the sense that we go actively and say, you know, you could also have home haemodialysis. If you feel that the patient is interested then someone would maybe offer it, but we're not promoting it actively. (Female nephrologist, 40s, Germany) | |
| I think nephrologists don't talk about it to the patients in most cases. Many patients don't know that it is a possibility. (Female nephrologist, 40s, Portugal) | |
| There isn't educational program for these patients; there is no promotion of home haemodialysis for patients. (Male nephrologist, 50s, Italy) | |