Self-Management Experiences in Transition of Newly Diagnosed Chronic Kidney Disease Patients

Purpose: To explore the self-management experiences and adaptation process of patients in the transition of playing the new roles suffering from chronic kidney disease.

Methods: This was a qualitative descriptive study. In-depth interviews were conducted with 45 CKD patients in the nephrology outpatient units of four hospitals. Data were collected from October 2013 to May 2014, and then analysed using content analysis.

Results: By conducting qualitative interviews regarding patients’ self-management experiences and adaption process, Two themes emerged. Theme I: The unsayable feeling of suffering from the chronic kidney disease included the following: “Coming quietly but affecting heavily, Vulnerable people live under medical professionals; life sucks: facing the constraints of disease and losing control over daily life, living fearfully that grenades will explode at any time, getting into a dilemma: rational and perceptual emotions, and the self is the key to fighting renal disease.” Theme II: The expectations and needs during the process of disease self-management included the following: “Looking forward to having a normal life: to stop being a burden to family, having the information and a guide for melting away life’s cares, having a navigator to help us sketch the contours of the future, having friendly partnership with health care providers, having the stamina of a marathon runner, and having the tire pump and gas station close by.”

Conclusion: Improving patients’ and health care providers’ kidney disease awareness to avoid late referrals and treatment can minimize the negative effects of kidney disease in patients. Self-management is a crucial task in kidney disease care. People who are elderly, who do not live with their families, and have inadequate social support were the low health-literacy population and the high risk population; therefore, they must be prioritized when administering disease care interventions. Kidney disease care competency can be improved among the high-risk population by coordinating effective social support networks. The ideal CKD care concept is person-centered, family-oriented, and community-driven, and an adaptive care model must be designed based on the progress of the disease and the level of health literacy to provide a service appropriate for patients’ needs. Consequently, patients can effectively learn disease care skills and efficiently implement self-management.