Visiting informants in their home, we could observe how dialysis influenced their everyday activities. One informant had just come home from moose hunting. Another had installed himself for the CAPD procedures by the kitchen table, which offered the best view in the house; and one had arranged a home hospital in the basement living room, where helpers and friends regularly paid visits.
Major themes that emerged from the interviews were: (i) choice of modality; (ii) training and coping; (iii) communication with health services; (iv) quality-of-life and sick role; (v) potential for telemedicine.
Choice of modality
All of our interviewees expressed satisfaction with the choice of home dialysis. Many pointed out that they could have wanted information about the possibility of home dialysis, as well as information about different modalities, at an earlier stage. Observation of and listening to other patients' experiences were often more influential on their choice than information from health professionals:
- ... all those with haemodialysis, they are in fact mostly bedridden, being transported down three times a week, and completely exhausted when they come back, and they say they are in pain afterwards, too. ... I talked to several people who were in hospital just for controls of that PD-dialysis. One, an old man of 80 years, told that he took the equipment along when he was in the forest chopping wood ... (PD patient)
- They, the doctors, can explain, so and so is it, but they cannot tell how you experience it. Oh, it was really good to talk with others who have experienced the same thing. I think this could be a lot of the reason that you make a choice, really ... (PD patient)
The interviewees had individual reactions to the different modalities, according to their personal preferences and life situation:
- ...the nice thing with the [night] machine is that you get the day free, then you can do whatever you want. But there is a slight catch to it, to get these catheters to work ... (PD patient)
- I am young you know; we are out at night now [in summer], and I had to go home and arrange my stuff. I was just pissed off with the machine; honestly, it was puffing and blowing; I was lying there, and felt maybe I was caught by it. No, I just couldn't manage that... (PD patient)
The HHD users had all discovered this modality by chance, and they had to make quite hard efforts and actively request the hospital to acquire the competence to deliver this alternative to them:
- ... If I had continued with hospital dialysis, I had been dead ... I realized that I had to take control of the situation, otherwise I would not bear to live. In part, I would die from physical diseases, in part I would die of depression ... The doctors were willing, but the method was almost forgotten. They were a little shaky, the procedure had to be invented all over again ... (HHD patient)
Training and coping
Nearly all the respondents felt they had received sufficient training in the hospital. They found the treatment easy to learn and manage, and after a while they mostly felt safe in the home setting.
- ...so after that week there, then I had it all in my head, it was no problem. Yes, then it all worked automatically. (PD patient)
- ....was initially a bit sceptical; thought it was worse than it really was. (PD patient)
- It was just to get home and get away from the hospital. It was just to take the bag and hang it on the wall ... (PD patient)
- The first ten times, the tubes and all are a total chaos, but once you have practiced for a while, it's not that hard ...(HHD patient)
In contrast to this, one of the older informants with APD felt insecure and did not like being alone at night. This feeling was strengthened when, in the beginning, neither the informant nor the community nurses were able to manage the machine alarms:
- They say the treatment is harmless, but you're taught to be afraid of electricity. I'm safer now, but jump when the alarm goes ... (PD patient)
After a time at home the interviewees developed a considerable ability to manage their own illness, and were often so independent that they could react to complications and even suggest adjustments in the treatment:
- My situation is incredibly more stable and calm than what is usual in the hospital ... three hours of dialysis is no problem, no stress... Eventually you get to understand how much fluid to remove, the correlations... [You] get responsibility and then understand more. With more frequent dialysis one does not need to remove as much fluid. The chance of blood pressure fall is almost gone; it's almost like a jog... (HHD patient)
- ...have been ill for many years and know the symptoms in my body clearly. The blood pressure may vary by the amount of fluid removal, but [I] have not had blood pressure fall at home. Must be stable to take HHD, [can get] cramps in my legs, [be] dizzy and ill. Must be familiar with the symptoms, but have not had any of this at home, I stop the ultrafiltration before it comes that far ... (HHD patient)
Communication with health services
The feelings of security and coping when coming home were closely related to satisfactory access to professionals in the dialysis unit. The informants required very close contact with the hospital staff for issues concerning machine alarms, complications and related diseases, but also routinely for practical things like ordering materials. This was a very personal relationship, where the patient had his own nephrologist over time and had a direct number to the hospital department. The dialysis nurses knew practically everyone by their voice; it was enough to call and say, "Hey, it's me."
-...Important that the kidney doctor is involved in everything that happens. It is a clear precondition for optimal treatment of chronic dialysis patients to have an open door to the hospital. (HHD patient)
-I know the nurses, no matter who I call, they know me. They have been very supportive ... (PD patient)
Most had little contact with primary health services and with their general practitioner (GP), so that it was the nephrologist who functioned as their GP also in cases of minor intercurrent diseases. This was partly because many had developed knowledge about their disease that exceeded the competence of the GP.
-And he [the kidney doctor] has taken care of nearly everything, so I don't have to go to the GP... (PD patient)
-The GP and I agree that it is I who am the specialist... (HHD patient)
Quality of life and sick role
The alternative to home dialysis was CHD, which would occupy four hours, three days a week in addition to the travel time needed. Informants felt that having to be dependent on the hospitals' opening hours would be a significant obstacle to living a normal life with regard to work and leisure time.
-...super important to have had home dialysis, have completed education, [have been] financially independent, had an almost full and normal life. Have worked, taken care of myself, controlled my own time. [This] has done that I have kept healthier; [I] had been on a completely different planet if I had received disability pension 18-years-old. (HHD patient)
Those who had received CHD earlier, told that home treatment provided a considerably improved quality of life. Many felt in better shape and had less medical complications:
-... from lying in the hospital three days a week with that hemodialysis and being ill and in bad shape and everything, and repetitions on the drinking and eating and stuff. When I changed to this type of dialysis, it was quite a different everyday life for me. (PD patient)
-...when I now see how much better I am, and how much better I function in everyday life, i find it somewhat strange, that there are not more of the patients that go for the system that I have. (PD-patient)
-...got a very different life when I changed from hemodialysis to PD. Especially after I got the night machine it was much easier, you can utilize the day better; not a problem to be fully employed... (PD patient)
Despite having a very serious illness and the fact that they spent a lot of their time on dialysis, many perceived themselves only to a limited extent as ill. It seems that being able to take control of their lives also helped them not feel like patients:
-When I take the treatment myself, I shelter myself from being a patient... (HHD patient)
The time outside the dialysis was too valuable to be wasted on long journeys to and stay in the hospital. In addition, in the hospital, they experienced how sick many of the other patients were; which was an uncomfortable reminder that this might be their fate also:
-... stressing to get to know so sick patients, see that young people are dying, disgusting to be reminded that so sick can I be. [I have] not seen myself as sick ... (HHD patient)
Potential for telemedicine
Informants felt that routine admissions to the hospital were a strain, and they suggested that follow-up could be conducted by telecommunication.
-... don't have to travel to the city; to spend 10 minutes, instead of as now, to spend a whole day. (PD patient)
The six persons on dialysis machines (APD and HHD) were most responsive to telemedicine guidance and follow-up in their home, believing that this could enable more patients to have dialysis at home:
-...so it had been ingenious to have that camera function stuff, then one can actually see....because it is not as easy to explain everything over the phone. It gives a feeling of safety [when] somebody observes that everything is going as it should. (PD patient)
Those with HHD were especially positive to the potential of ICT solutions, like transmission of data and remote monitoring and problem-solving over VC:
-... a central unit with a webcam to monitor the on-and off-coupling procedures; for that is what people are afraid of. Then even the most nervous and insecure persons can handle this. (HHD patient)
-... with videoconference the responsibility of the dialysis user will not be so heavy as it is today. I would also think that it could be less scary to start up, when you are not alone. .... could [then] be easier to motivate for home hemodialysis ...(HHD patient)
Those without machines did not see advantages of telemedicine. For instance, most of the respondents with CAPD, generally the older men, were satisfied to use their mobile phone when needing to call the hospital department:
-...I think it's best to explain through the phone. (PD patient)
-...I write it down in a form, and eventually read it loud for them on the phone. [I] will not have it transmitted on data, I'm too old to do things like that... (PD patient)
-...had it been as easy as just turning on the TV, then it hadn't been a problem... (PD patient)