JMIR Publications

ABSTRACT

Background:

Chronic kidney disease (CKD) is a common condition all over the world and home dialysis (HD) provides significant economic, quality of life, and clinical advantages compared to other dialysis modalities. Human-centred design aims to support the development of eHealth solutions with high usability and user experience. However, research on HD patients’ needs for eHealth solutions is scarce.

Objective:

This study aimed to support the design of eHealth for CKD patients, particularly for HD patients, by developing a Kidney Disease Experience Map that illustrates user needs, concerns, and barriers. The research questions were: 1) What experiences do patients, particularly older adults, have in their lives with CKD? 2) What user needs do patients with CKD have for HD eHealth? 3) How can these needs be illustrated utilizing the experience map technique? The study focused on patients over the age of 60, as they are at a higher risk of chronic conditions. The study was conducted as part of the eHealth in Home Dialysis project, coordinated by Hospital District of Helsinki and Uusimaa (HUS), Finland.

Methods:

In total, 18 patients in different care modalities participated in retrospective interviews conducted between October 2020 and April 2021. The interviews included a preliminary task with patient journey illustrations and questions about their experiences and everyday lives with CKD. The data analysis was conducted utilizing a thematic analysis approach and the process included several phases.

Results:

Based on the thematic analysis five categories were identified: healthy habits, concerns and use barriers for eHealth, digital communication, patients’ emotions, and everyday life with CKD. These were illustrated in the first version of the Kidney Disease Experience Map. The patients had different healthy habits regarding social life, sports, and other activities. They had challenges with poorly functioning eHealth software but also experienced other factors such as a lack of interest and lack of skills for eHealth use. Technical devices do not always meet the emotional or physical needs of their users. This caused frustration, worry and fear in patients, yet also situational awareness and hope.

Conclusions:

The experience map is a promising method for illustrating user needs for eHealth and communicating a patient’s voice for eHealth development. eHealth offers possibilities to support patient´s everyday life with chronic disease. The patient's situation and capacity to use eHealth solutions vary with everyday challenges and opportunities and the current stage of treatment. The Kidney Disease Experience Map will be utilized and further developed in the ongoing research project ‘Better Health at Home – Optimized Human-Centered Care of Predialysis and Home Dialysis Patients’ (2022 – 2026).