Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, PO Box 35, N-9038 Tromsø, Norway.
BMC Nephrol. 2012 Mar 19;13:13. doi: 10.1186/1471-2369-13-13.
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.
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.
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.
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.
本研究考察了患者在选择透析方式以及建立和进行家庭透析时对信息和指导的需求。本研究重点关注患者的家庭透析体验，他们如何掌握治疗方法，以及他们对如何优化与卫生服务的沟通以及远程医疗的潜力的看法。
我们采用了归纳研究策略，对 11 名已接受家庭透析的患者进行了半结构化访谈。我们的重点是患者的家庭透析体验，我们的理论参考是通过远程医疗解决方案增强患者的能力。3 名受访者接受家庭血液透析（HHD）；8 名接受腹膜透析（PD），其中 3 名接受自动化腹膜透析（APD）；5 名接受持续非卧床腹膜透析（CAPD）。该材料包括当时该地区所有能够接受访谈的 PD 患者和挪威所有已知的 HHD 使用者。
所有受访者都对他们选择家庭透析感到满意，许多人经历了日常生活的正常化，较少受到疾病的影响。他们表现出相当强的自我管理能力，并不认为自己患病，但仍需要与医院工作人员保持密切联系，进行沟通和随访。在选择透析方式时，其他患者的经验往往比专家的建议更有影响力。有关 HHD 可能性的信息，包括如何获得 HHD 的知识，并不容易获得。特别是那些有透析机的患者，包括 APD 和 HHD，都看到了远程医疗解决方案的潜力。
由于家庭透析可能有助于减少疾病对生活的影响，因此应组织治疗，以充分利用家庭透析的潜力。透析前的信息应该是公正的，包括获得其他患者的经验。远程医疗可能有助于基于沟通的随访，并提高家庭环境中的安全性，使选择和接受家庭透析变得更加容易。
