ArticleBMC nephrology2022
Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community.
Article in BMC nephrology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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13 citing papers in PubMed, 18 citations in OpenAlex.
- Defining diagnostic disclosure in the acute care setting: A concept analysis.International journal of nursing studies · 2026Review
- Knowledge, attitude, and practice toward medical nutritional therapy among patients with chronic kidney disease.Frontiers in nutrition · 2026Article
- Blood Glucose Management Behaviour Among Haemodialysis Patients with Diabetes: A Qualitative Study Guided by the Theory of Planned Behaviour.Patient preference and adherence · 2026Article
- DHerbKB for CKD: knowledge base of diet and toxic herbal medicines for clinical support of chronic kidney disease.Journal of translational medicine · 2025Article
- Association between loneliness and self-care in elderly individuals with chronic kidney disease: a structural equation modeling approach.BMC public health · 2025Article
- A Pilot Clinical Trial of a Nutrition Education Program on Quality of Life in CKD.Clinical journal of the American Society of Nephrology : CJASN · 2025Article
- Factors associated with self-care in people with advanced chronic kidney disease and their experience of care in Catalonia: an application of Leventhal's self-regulatory model.BMC nephrology · 2025Article
- Harnessing Social Media Data to Understand Information Needs About Kidney Diseases and Emotional Experiences With Disease Management: Topic and Sentiment Analysis.Journal of medical Internet research · 2025Article
- Experiences and coping strategies among patients with Chronic Renal Failure (CRF) in Ghana: A phenomenological study.PLOS mental health · 2025Article
- Exploring How the Kidney BEAM Physical Activity Digital Health Intervention Improved Mental Health-Related Quality of Life for People Living With Kidney Disease.Kidney international reports · 2024Article
- Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review.Journal of medical Internet research · 2024Article
- Impact of COVID-19 on Disease Self-management Among Patients With Advanced CKD: A Qualitative Study.Kidney medicine · 2023Article
- Integrating machine learning to construct aberrant alternative splicing event related classifiers to predict prognosis and immunotherapy response in patients with hepatocellular carcinoma.Frontiers in pharmacology · 2022Article
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSelf-management of chronic kidney disease (CKD) is one of the keys in improving CKD outcomes and quality of life. There has been an increased use of online health communities to share the experiences of those living with CKD. By analyzing the CKD online forum data, this study aims to: 1) understand the experiences and challenges of individuals living with CKD, and 2) explore how online communities may help CKD patients in improving CKD self-management.
methodsPublicly available posts of peer interactions on the National Kidney Foundation's online community for individuals affected by CKD were extracted in April 2021 using computer programming. A total of 20,436 posts were collected, of which 400 posts were analyzed using inductive thematic analysis, and saturation was reached. Two researchers coded each post independently, and discrepancies were discussed to reach consensus.
resultsThe analysis identified seven themes: 1) Dynamics of CKD status, 2) CKD comorbidities, 3) Managing CKD and symptoms, 4) Life participation and outlook; 5) Navigating healthcare and clinical needs, 6) Medical tests and results; and 7) Support on the forum. The results revealed that comorbidities were common in CKD patients and early-stage CKD was not communicated in a timely manner to patients by the health care community; living with CKD challenged both CKD and caregivers; some common challenges included but were not limited to the management of a diet for CKD and co-morbidities (especially co-morbid diabetes), CKD dynamics and symptoms, and fear of/ways to prevent progression. Individuals living with CKD primarily used the online forum to share and seek information and emotional support for managing CKD (including co-morbidities).
conclusionsChallenges of living with CKD were found not only in those with advanced kidney disease and those on dialysis, but also in those with early and middle stages. Information and emotional support from the online forum serve as a platform to empower CKD individuals with the knowledge, skills and confidence for CKD self-management. Proactive and innovative strategies with a combination of virtual and real settings to improve self-management for individuals with all-stage CKD needs to be explored and tailored.
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