Enhancing Self-management Support for Adults with Chronic Kidney Disease: A Person-centered, Theory-informed Approach
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2019-11
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Strategies to support patients to self-manage their chronic kidney disease (CKD) have been identified as one of the top 10 kidney research priorities internationally. Recognizing that this research priority is key to delivering person-centered care, this thesis examines enhancing adult CKD self-management support using patient-centered and theoretical approaches. We conducted three sequential studies: a scoping review to identify and describe self-management interventions for adult patients with CKD; a descriptive qualitative study to identify the needs of adults with CKD and their caregivers based on their experiences with managing CKD; and a one-day consensus workshop using personas to determine the preferences for content and features for a CKD patient self-management electronic health (eHealth) tool. We found a lack of patient engagement and application of behaviour change theories in the development of CKD self-management interventions. In addition, we identified the needs of patients and their caregivers regarding areas of knowledge, information sharing, and relevant supports for self-management in early stages of CKD. Patients, caregivers, health care professionals, and policy makers provided detailed subject matter for CKD topic areas, as well as preferred features to consider for a novel approach to supporting CKD self-management. This thesis work is pragmatic, as well as innovative in nature. To our knowledge, this is the first multi-phase study to meaningfully engage patients with CKD and caregivers as patient partners. Their involvement went beyond the role of consultation, where they actively participated in informing all phases of the research. To enhance CKD self-management support, our work offers evidence to inform the co-development of a tailored self-management support intervention for adults with CKD and their informal caregivers in Canada.
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Donald, M. (2019). Enhancing Self-management Support for Adults with Chronic Kidney Disease: A Person-centered, Theory-informed Approach (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.