scholarly journals Closing the loop in person-centered care: patient experiences of a chronic kidney disease self-management intervention

2017 ◽  
Vol Volume 11 ◽  
pp. 1963-1973 ◽  
Author(s):  
Kathryn Havas ◽  
Clint Douglas ◽  
Ann Bonner
2021 ◽  
Vol 104 (2) ◽  
pp. 003685042110261
Author(s):  
Al Sawad Ayat Ali ◽  
Soo Kun Lim ◽  
Li Yoong Tang ◽  
Aneesa Abdul Rashid ◽  
Boon-How Chew

The complexity of chronic kidney disease (CKD) and its treatments have made self-management behaviors inevitably challenging. However, supplementing education with self-management skills may improve numerous health outcomes in people with nondialysis CKD. This study protocol describes a randomized controlled trial (RCT) aimed to evaluate the effects of a nurse-led self-management support program as an intervention for kidney disease knowledge and CKD self-management behaviors among people with pre-dialysis CKD. In Phase 1, people with CKD stage 3–4 and their family members are involved in co-designing, development and pilot testing of a theory-based self-management intervention. In Phase 2, we perform a cross-cultural adaptation of the Kidney Disease Knowledge Survey, CKD Self-Management and Self-efficacy for Managing Chronic Disease questionnaires. In Phase 3, a parallel RCT will be conducted to evaluate the intervention where 154 participants with CKD stage 3–4 will be randomly assigned to either the intervention ( n = 77) or control group ( n = 77). The intervention group will receive 6-week self-management program from a nurse-coach in addition to standard usual care, while the control group will receive only standard usual care. Outcome measures include kidney disease knowledge, CKD self-management behavior, self-efficacy, quality of life, blood pressure control and adherence to CKD diet as indicated by 24-h urine urea nitrogen, 24-h urine sodium and net endogenous acid production. Data will be collected at baseline and 12-week post-baseline. The between- and within-group intervention effects will be estimated using the Generalized Estimating Equations. The self-management intervention offers strategies to delay CKD progression and to encourage motivation to better self-manage at home. This study integrates self-management education and psychosocial support with culturally relevant scenarios, and evaluates important self-reported and objective outcomes. Clinical Trials Registration: www.ClinicalTrials.gov , identifier: NCT03974646.


BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044059
Author(s):  
Hongxia Shen ◽  
Rianne M J J van der Kleij ◽  
Paul J M van der Boog ◽  
Wenjiao Wang ◽  
Xiaoyue Song ◽  
...  

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.


2021 ◽  
Vol 31 ◽  
pp. S37-S40
Author(s):  
Irsanty Collein ◽  
Ratna Sitorus ◽  
Krisna Yetti ◽  
Sutanto Priyo Hastono

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Esmaeel Toni ◽  
Habibollah Pirnejad ◽  
Khadijeh Makhdoomi ◽  
Azam Mivefroshan ◽  
Zahra Niazkhani

Abstract Background To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient’s education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users’ needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use. Methods A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology. Results Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients’ conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use. Conclusions We focused on the ePHR’s content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients’ needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR’s adoption.


2012 ◽  
Author(s):  
Chiu-Chu Lin ◽  
Chia-Chen Wu ◽  
Li-Min Wu ◽  
Hsing-Mei Chen ◽  
Shu-Chen Chang

Author(s):  
Kelly Li ◽  
Mark Brown

This chapter outlines the management of patients with advanced chronic kidney disease for whom dialysis may not be beneficial or desired. Active medical management without dialysis should be offered to patients through a shared-decision making process as a viable alternative to dialysis. This is important as patients and families wish to consider not only survival, but also symptom control and QoL in their decision to pursue a dialysis or nondialysis pathway. A multidisciplinary team delivering good quality, active, and patient-centered care that combines chronic kidney disease management with the principles of palliative care can help patients achieve good symptom management and quality of life. Active and early planning for the end-of-life phase facilitates appropriate care for patients in acute and/or unexpected deterioration and helps achieve patient and family goals.


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