Co-Creation of a Multi-Component Health Literacy Intervention Targeting Both Patients with Mild to Severe Chronic Kidney Disease and Health Care Professionals

Limited health literacy (LHL) is common in chronic kidney disease (CKD) patients and frequently associated with worse self-management. Multi-component interventions targeted at patients and healthcare professionals (HCPs) are recommended, but evidence is limited. Therefore, this study aims to determine the objectives and strategies of such an intervention, and to develop, produce and evaluate it. For this purpose, we included CKD patients with LHL (n = 19), HCPs (n = 15), educators (n = 3) and students (n = 4) from general practices, nephrology clinics and universities in an Intervention Mapping (IM) process. The determined intervention objectives especially address the patients’ competences in maintaining self-management in the long term, and communication competences of patients and HCPs. Patients preferred visual strategies and strategies supporting discussion of needs and barriers during consultations to written and digital strategies. Moreover, they preferred an individual approach to group meetings. We produced a four-component intervention, consisting of a visually attractive website and topic-based brochures, consultation cards for patients, and training on LHL for HCPs. Evaluation revealed that the intervention was useful, comprehensible and fitting for patients’ needs. Healthcare organizations need to use visual strategies more in patient education, be careful with digitalization and group meetings, and train HCPs to improve care for patients with LHL. Large-scale research on the effectiveness of similar HL interventions is needed.

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A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals

Patient Education and Counseling ◽

10.1016/j.pec.2021.05.016 ◽

2021 ◽

Author(s):

Marco D. Boonstra ◽

Sijmen A. Reijneveld ◽

Ralf Westerhuis ◽

Janne M. Tullius ◽

Johanna P.M. Vervoort ◽

...

Keyword(s):

Health Care ◽

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Health Care Professionals ◽

Self Management ◽

Limited Health Literacy ◽

Literacy Perspectives ◽

Limited Health ◽

End Stage

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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.

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How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfaa273 ◽

2020 ◽

Author(s):

Marco D Boonstra ◽

Sijmen A Reijneveld ◽

Elisabeth M Foitzik ◽

Ralf Westerhuis ◽

Gerjan Navis ◽

...

Keyword(s):

Systematic Review ◽

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Health Outcomes ◽

Evidence Synthesis ◽

Health Behaviours ◽

System Level ◽

Healthcare Organizations ◽

Best Evidence Synthesis

Abstract Background Limited health literacy (LHL) is associated with multiple adverse health outcomes in chronic kidney disease (CKD). Interventions are needed to improve this situation, but evidence on intervention targets and strategies is lacking. This systematic review aims to identify potential targets and strategies by summarizing the evidence on: (i) patient- and system-level factors potentially mediating the relation between LHL and health outcomes; and (ii) the effectiveness of health literacy interventions customized to CKD patients. Methods We performed a systematic review of peer-reviewed research articles in Medline, Embase and Web of Science, 2009–19. We assessed the quality of the studies and conducted a best-evidence synthesis. Results We identified 860 publications and included 48 studies. Most studies were of low quality (n = 26) and focused on dialysis and transplantation (n = 38). We found strong evidence for an association of LHL with smoking and having a suboptimal transplantation process. Evidence was weak for associations between LHL and a variety of factors related to self-care management (n = 25), utilization of care (n = 23), patient–provider interaction (n = 8) and social context (n = 5). Six interventions were aimed at improving knowledge, decision-making and health behaviours, but evidence for their effectiveness was weak. Conclusions Study heterogeneity, low quality and focus on kidney failure largely impede the identification of intervention targets and strategies for LHL. More and higher quality studies in earlier CKD stages are needed to unravel how LHL leads to worse health outcomes, and to identify targets and strategies to prevent disease deterioration. Healthcare organizations need to develop and evaluate efforts to support LHL patients.

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The Roles of Social Support and Health Literacy in Self-Management Among Patients With Chronic Kidney Disease

Journal of Nursing Scholarship ◽

10.1111/jnu.12377 ◽

2018 ◽

Vol 50 (3) ◽

pp. 265-275 ◽

Cited By ~ 21

Author(s):

Yu-Chi Chen ◽

Li-Chun Chang ◽

Chieh-Yu Liu ◽

Ya-Fang Ho ◽

Shuo-Chun Weng ◽

...

Keyword(s):

Social Support ◽

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Self Management

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Health Literacy Self-Management by Patients With Type 2 Diabetes and Stage 3 Chronic Kidney Disease

Western Journal of Nursing Research ◽

10.1177/0193945909334096 ◽

2009 ◽

Vol 31 (5) ◽

pp. 627-647 ◽

Cited By ~ 17

Author(s):

Teresa J. Sakraida ◽

Marylou V. Robinson

Keyword(s):

Type 2 Diabetes ◽

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Self Management

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A scoping review of the role of health literacy in chronic kidney disease self‐management

Journal of Renal Care ◽

10.1111/jorc.12364 ◽

2021 ◽

Author(s):

Jennifer M. Shah ◽

Joanne Ramsbotham ◽

Charrlotte Seib ◽

Rachel Muir ◽

Ann Bonner

Keyword(s):

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Scoping Review ◽

Self Management

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Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-044059 ◽

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 ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Healthcare Professionals ◽

Illness Perceptions ◽

Chinese Patients ◽

Self Management ◽

Tertiary Referral Hospital ◽

Chinese Context ◽

Management Interventions

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.

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The Psychosocial and Somatic Effects of Relocation from Remote Canadian First Nation Communities to Urban Centres on Indigenous Peoples with Chronic Kidney Disease (CKD)

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18073838 ◽

2021 ◽

Vol 18 (7) ◽

pp. 3838

Author(s):

Denise Genereux ◽

Lida Fan ◽

Keith Brownlee

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Indigenous Peoples ◽

Health Care Professionals ◽

Medical Condition ◽

Geographical Location ◽

Well Being ◽

First Nation ◽

Urban Centre ◽

The Impact

Chronic kidney disease, also referred to as end-stage renal disease (ESRD), is a prevalent and chronic condition for which treatment is necessary as a means of survival once affected individuals reach the fifth and final stage of the disease. Dialysis is a form of maintenance treatment that aids with kidney functioning once a normal kidney is damaged. There are two main types of dialysis: hemodialysis (HD) and peritoneal dialysis (PD). Each form of treatment is discussed between the patient and nephrologist and is largely dependent upon the following factors: medical condition, ability to administer treatment, supports, geographical location, access to necessary equipment/supplies, personal wishes, etc. For Indigenous Peoples who reside on remote Canadian First Nation communities, relocation is often recommended due to geographical location and limited access to both health care professionals and necessary equipment/supplies (i.e., quality of water, access to electricity/plumbing, etc). Consequently, the objective of this paper is to determine the psychosocial and somatic effects for Indigenous Peoples with ESRD if they have to relocate from remote First Nation communities to an urban centre. A review of the literature suggests that relocation to urban centres has negative implications that are worth noting: cultural isolation, alienation from family and friends, somatic issues, psychosocial issues, loss of independence and role adjustment. As a result of relocation, it is evident that the impact is profound in terms of an individuals’ mental, emotional, physical and spiritual well-being. Ensuring that adequate social support and education are available to patients and families would aid in alleviating stressors associated with managing chronic kidney disease.

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