A Qualitative Study of Facilitators and Barriers to Self-management of Chronic Kidney Disease

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.

Download Full-text

Facilitators and barriers to self-management of patients chronic kidney disease

Enfermería Clínica ◽

10.1016/j.enfcli.2020.10.014 ◽

2021 ◽

Vol 31 ◽

pp. S37-S40

Author(s):

Irsanty Collein ◽

Ratna Sitorus ◽

Krisna Yetti ◽

Sutanto Priyo Hastono

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Self Management ◽

Facilitators And Barriers

Download Full-text

Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01689-2 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Esmaeel Toni ◽

Habibollah Pirnejad ◽

Khadijeh Makhdoomi ◽

Azam Mivefroshan ◽

Zahra Niazkhani

Keyword(s):

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Qualitative Study ◽

Personal Health Record ◽

Self Management ◽

Personal Health ◽

Health Record ◽

User Centered Design ◽

Electronic Personal Health Record

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.

Download Full-text

The self-management experience of patients with type 2 diabetes and chronic kidney disease: A qualitative study

Chronic Illness ◽

10.1177/1742395315614381 ◽

2015 ◽

Vol 12 (1) ◽

pp. 18-28 ◽

Cited By ~ 10

Author(s):

Shayan Shirazian ◽

Natalie Crnosija ◽

Katie Weinger ◽

Alan M Jacobson ◽

Joonho Park ◽

...

Keyword(s):

Type 2 Diabetes ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

The Self ◽

Self Management ◽

Management Experience

Download Full-text

Understanding Adults With Chronic Kidney Disease and Their Caregivers’ Self-Management Experiences: A Qualitative Study Using the Theoretical Domains Framework

Canadian Journal of Kidney Health and Disease ◽

10.1177/2054358119848126 ◽

2019 ◽

Vol 6 ◽

pp. 205435811984812 ◽

Cited By ~ 5

Author(s):

Sarah Baay ◽

Brenda Hemmelgarn ◽

Helen Tam-Tham ◽

Juli Finlay ◽

Meghan J. Elliott ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Theoretical Domains Framework ◽

Self Management

Download Full-text

Patient Empowerment Through a User-Centered Design of an Electronic Personal Health Record: A Qualitative Study of user Requirements in Chronic Kidney Disease

10.21203/rs.3.rs-457607/v1 ◽

2021 ◽

Author(s):

Esmaeel Toni ◽

Habibollah Pirnejad ◽

Khadijeh Makhdoomi ◽

Azam Mivefroshan ◽

Zahra Niazkhani

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Personal Health Record ◽

Self Management ◽

Personal Health ◽

Health Record ◽

User Centered Design ◽

Educational Content ◽

Electronic Personal Health Record

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 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 the implementation and adoption of an ePHR in nephrology care. Different users' requirements should inform the design and implementation of ePHR system especially in the context of CKD care. The insights gained can help ePHR designers and implementers to better support CKD patients in self-management.

Download Full-text