Abstract
BackgroundThis study examines the patients' need for information and guidance in the selection of dialysis modality, and in establishing and practicing home dialysis. The study focuses on patients' experiences living with home dialysis, how they master the treatment, and their views on how to optimize communication with health services and the potential of telemedicine.MethodsWe used an inductive research strategy and conducted semi-structured interviews with eleven patients established in home dialysis. Our focus was the patients' experiences with home dialysis, and our theoretical reference was patients' empowerment through telemedicine solutions. Three informants had home haemodialysis (HHD); eight had peritoneal dialysis (PD), of which three had automated peritoneal dialysis (APD); and five had continuous ambulatory peritoneal dialysis (CAPD). The material comprises all PD-patients in the catchment area capable of being interviewed, and all known HHD-users in Norway at that time.ResultsAll of the interviewees were satisfied with their choice of home dialysis, and many experienced a normalization of daily life, less dominated by disease. They exhibited considerable self-management skills and did not perceive themselves as ill, but still required very close contact with the hospital staff for communication and follow-up. When choosing a dialysis modality, other patients' experiences were often more influential than advice from specialists. Information concerning the possibility of having HHD, including knowledge of how to access it, was not easily available. Especially those with dialysis machines, both APD and HHD, saw a potential for telemedicine solutions.ConclusionsAs home dialysis may contribute to a normalization of life less dominated by disease, the treatment should be organized so that the potential for home dialysis can be fully exploited. Pre-dialysis information should be unbiased and include access to other patients' experiences. Telemedicine may potentially facilitate a communication-based follow-up and improve safety within the home setting, making it easier to choose and live with home dialysis.
Highlights
This study examines the patients’ need for information and guidance in the selection of dialysis modality, and in establishing and practicing home dialysis
All patients on peritoneal dialysis (PD) affiliated with the University Hospital of North Norway (UNN) were eligible, and inclusion criteria were whether they were well established in home dialysis and fit physically and/or mentally to be interviewed and visited in their home
One informant had just come home from moose hunting. Another had installed himself for the continuous ambulatory peritoneal dialysis (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
Summary
This study examines the patients’ need for information and guidance in the selection of dialysis modality, and in establishing and practicing home dialysis. The study focuses on patients’ experiences living with home dialysis, how they master the treatment, and their views on how to optimize communication with health services and the potential of telemedicine. Other Scandinavian countries have higher rates for home dialysis, for instance Denmark (30%) [2,3]. This finding indicates a potential for increasing the rate of home dialysis in Norway. Based on the growing numbers of patients suffering ESRD and increased pressure on the rental units, there is an initiative in Norway for increasing the rate of home dialysis [7]
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