e-Health tools and online information: Investigating self-management of PKD

I have recently been awarded a small research grant for a project that will lead to the development of a larger body of e-health research related to the use of e-health tools and online information in the self-management of chronic illness. This work will be conducted as a scoping study that will focus on people with polycystic kidney disease (PKD) as a case study.

This work draws on my existing body of research that is concerned with human information behaviours and use in online environments, especially as it relates to everyday life and “lived” experiences. Marina Milosheva is the Research Assistant for this project. As part of her PhD, Marina has developed expertise in everyday life information behaviours and information literacy (including health management) and has conducted literature reviews of health information behaviours and health information literacy as part of her previous work.

It is anticipated that we will complete our literature review and data collection over the next four months. Our intention is to use questionnaires and interviews for this stage of the research. I will disseminate the outputs from this work here in due course.

What is PKD and why use it for a case study?

PKD is a genetic, progressive kidney disease for which there is no cure. People with PKD begin to develop symptoms by adulthood which worsen as the disease progresses, eventually leading to kidney failure. There are online support groups dedicated to seeking and sharing peer support as well as a limited number of e-health tools available from the NHS for the self-management of care. Previous research has indicated that people with chronic kidney disease are interested in the use of e-health tools for their conditions, however, there is a lack of research considering the range of e-health tools and online information that are used and the real or perceived benefits derived from using them.

This work is funded under the Edinburgh Napier University SoC/SEBE Starter Research and Innovation Grant initiative.

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