Our preconception was that telemedicine may be useful in supporting patients doing dialysis in their homes, thus making it easier for more patients to choose and live with home dialysis. This could, as a result, lead to enhanced quality of life and better treatment for more patients. Many of our interviewees had no previous experience with telemedicine. We therefore had to explain what this concept implied. They, in turn, responded to their experiences with home dialysis without telemedicine, and their imagination of what telemedicine could add. Several informants, especially those without machines, did not see any added value of telemedicine, which suggests that they did not feel obliged to please us. Others, mainly respondents using dialysis machines, saw benefits in telemedicine and ICT. This may indicate that they were more familiar with the use of technology.
Sample size and selection
This study represents comprehensive in-depth interviews of a purposeful sample of PD-patients in the catchment area of the University Hospital of North Norway, and all known HHD users in Norway at the time the study was conducted. The small sample size reflects the limited population of 230 000 inhabitants in this area. During 2008 the number of patients receiving PD fluctuated from sixteen patients in January to eight patients in December (4). There is no reason to believe that our results and conclusions would be different if we had interviewed more of the excluded patients. Although data saturation was not a question, since we interviewed all the feasible patients, we found our material robust and diverse, appropriate to answer the research questions of this study. The observations of the patients in their homes gave additional insight into informants' everyday life. The fact that all PD users came from the same catchment area, may imply that the pre-dialysis information may not be the same as for other areas where this is organized differently. However, as a whole the responses were consistent in illuminating patients' needs regarding choice of modality and their experiences from living with home dialysis, which makes the study transferable to this patient group on a larger scale.
Choice of dialysis modality
One main result of this study is the informants' satisfaction with their choice and their competence in the performance of home dialysis. It is also noteworthy that the possibility of having HHD was hard to access, confirming that the art of HHD has more or less been forgotten in Norway [3, 8]. It is important that information is provided so that users can make an educated choice in coherence with both their preferences and their options [23, 24]. We assume that most dialysis units try to practice this in line with accepted guidelines . However, treatment traditions, availability, capacity and staff skills are factors likely to influence the availability of choices. Particularly users starting with CHD often do not receive a choice of other modalities, and once established in a modality, they are seldom inclined to make a change [1, 2].
It was crucial for many of our informants to observe and speak with fellow patients who were using various forms of dialysis. However, these encounters occurred at random while they were in the hospital. The same is reported from Denmark, where patients wanted to meet peers before making a choice . These fellow patients may be seen as "lay experts" and should be used more systematically when informing and educating new patients . There is, however, a discussion whether patient-to-patient education may bias new patients' choices of modality . In our view also "objective", professional information may be biased; the doctor's advice reflecting his particular professional traditions and attitudes. The HHD-patients' experience, that this modality had been so hard to access, is one example of this. It is a challenge to build in access to the peer competence in the hospitals' organization. This may be organized, for example, by patient schools, and for practical reasons also by help of VC or web meetings.
Training and coping
The informants found the treatment surprisingly easy to learn and to master, and most felt safe in their home situation as long as they had easy access to the hospital staff by phone. Self-administered home dialysis requires that the users follow complex treatment regiments, monitor their condition and make decisions about treatment adjustments, deciding when to seek help and when to handle a problem on their own. Thus they become responsible for their daily management in a "collaborative partnership" with the hospital staff . Many of the interviewees in our study actually had a role that may be labeled as "co-specialists". Indeed, they appeared to have a unique knowledge of their illness, their body and of the management of their own life.
Communication with health services
The interviewees needed a very close link to the hospital to feel secure as self-managers. How this "umbilical cord" to the expertise should work in terms of organization, is a relevant issue for further discussions. With increasing use of home dialysis, more tasks may be transported to the primary health services, and in small municipalities where ESRD patients are rare, health care personnel will have little experience with these patients. Telemedicine may then represent a potential for remote support.
The health care system for chronic conditions in general has come into focus, and models for chronic care are described [21, 28–31]. Several of the components described as key elements in the "Chronic Care Model" are of relevance to patients with ESRD: Individual follow-up by informed health care personnel; decision support; and a proactive care plan on how to meet complications. A central element is "the informed, activated patient," requiring a shift in focus from traditional didactic patient information to patient empowerment and self-management skills [28, 32].
We believe, however, that it is important to distinguish between the fundamental differences in roles and responsibilities of the patient and the professional: "Patient empowerment" and "self-management" should not lead to excessive burdens and responsibilities on the patient [33, 34]. In this context, telemedicine may contribute to strengthened self-management and increased patient empowerment, respecting the differences in roles: This happens when telemedicine improves the conditions of home-based dialysis by improving access to professional expertise and supporting a communication-based follow-up.
Quality of life and sick role
Even though the dialysis program was time consuming and controlled much of their lives, the informants did not perceive themselves as being ill. They did not like being brought back into the patient role, such as during admissions in hospital for routine controls. It seems that mastering the treatment at home also brings along mastering the perceptions of the illness. This is also reported in Denmark: the patient role is not in keeping with the desire to live as normally and independently as possible, which is one of the main reasons for choosing home treatment . Others have also found that illness perceptions are linked to quality of life in ESRD patients . One striking feature in our study was the impressive life-stories of many of the informants when they compared hospital to home dialysis. On this basis we find it appropriate that decision makers design both the pre-dialysis information and the dialysis treatment so that the potential for home dialysis can be exploited optimally.
Potential for telemedicine
As mentioned earlier, the potential of telemedicine solutions was a hypothetical question, as the informants had little experience with this tool. According to many of the informants, telemedicine solutions may potentially help create security for themselves and others who otherwise could not choose home dialysis. This was especially applicable to the informants using dialysis machines. However, we assume that in the future more patients doing home dialysis may benefit from telemedicine for communication, training, and security. There are available systems enabling the transmission of dialysis data, blood pressure and weight to the hospital staff . VC may be useful for psychosocial support and for sorting out technical problems, and web based services may help gain access to informational material, and for patients to share their experiences. This may contribute to more equal access to health services and to reduced barriers to participation for those living in remote areas. Thus, both patients and local health care personnel may have a closer follow-up after initial training in the hospital. Remote monitoring centers, which are used in some countries for nightly HHD, may also be a model [18, 19].
In this study patients experienced a normalization of daily life, less dominated by disease when performing home dialysis. They found the treatment easy to learn, had achieved considerable self-management skills, but still needed a very strong link to the hospital for communication and follow-up. There is a need for unbiased and structured predialysis information, including access to other patients' experiences, and for organizing the treatment so that the potential for home dialysis can be better exploited. Especially for the patients with dialysis machines, telemedicine may potentially contribute to increased safety in the home setting, making it easier to choose and live with home dialysis. We suggest that telemedicine can contribute in the care for the chronically ill in general, as it may facilitate a communication-based follow-up with patients and professionals in a collaborative partnership.