Ellen Rygh1, Eli Arild, Elin Johnsen, Markus Rumpsfeld. 1. Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, PO Box 35, N-9038 Tromsø, Norway. ellen.rygh@telemed.no
Abstract
BACKGROUND: 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. METHODS: We 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. RESULTS: All 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. CONCLUSIONS: As 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.
BACKGROUND: 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. METHODS: We 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. RESULTS: All 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. CONCLUSIONS: As 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.
Authors: Mitchell H Rosner; Susie Q Lew; Paul Conway; Jennifer Ehrlich; Robert Jarrin; Uptal D Patel; Karen Rheuban; R Brooks Robey; Neal Sikka; Eric Wallace; Patrick Brophy; James Sloand Journal: Clin J Am Soc Nephrol Date: 2017-07-14 Impact factor: 8.237
Authors: Lindsey A Jones; Elisa J Gordon; Timothy P Hogan; Cindi A Fiandaca; Bridget M Smith; Kevin T Stroupe; Michael J Fischer Journal: Kidney360 Date: 2021-09-22
Authors: Matthew B Rivara; Todd Edwards; Donald Patrick; Lisa Anderson; Jonathan Himmelfarb; Rajnish Mehrotra Journal: Clin J Am Soc Nephrol Date: 2021-03-30 Impact factor: 8.237
Authors: Amanda Baumgart; Karine E Manera; David W Johnson; Jonathan C Craig; Jenny I Shen; Lorena Ruiz; Angela Yee-Moon Wang; Terence Yip; Samuel K S Fung; Matthew Tong; Achilles Lee; Yeoungjee Cho; Andrea K Viecelli; Benedicte Sautenet; Armando Teixeira-Pinto; Edwina A Brown; Gillian Brunier; Jie Dong; Nicole Scholes-Robertson; Tony Dunning; Rajnish Mehrotra; Saraladevi Naicker; Roberto Pecoits-Filho; Jeffrey Perl; Martin Wilkie; Allison Tong Journal: Nephrol Dial Transplant Date: 2020-11-01 Impact factor: 5.992