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. 2022 Mar 4;23(1):88.
doi: 10.1186/s12882-022-02717-7.

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community

Yan Du  1 , Brittany Dennis  2 , Valerie Ramirez  2 , Chengdong Li  3 , Jing Wang  3 , Christiane L Meireles  4
Affiliations

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community

Yan Du et al. BMC Nephrol. .

Abstract

Background: Self-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.

Methods: Publicly 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.

Results: The 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).

Conclusions: Challenges 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.

Keywords: Chronic kidney disease (CKD); Emotional support; Information support; Online forum; Qualitative research; Self-management.

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Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Lv JC, Zhang LX. Prevalence and disease burden of chronic kidney disease. Adv Exp Med Biol. 2019;1165:3–15. doi: 10.1007/978-981-13-8871-2_1. - DOI - PubMed
    1. Prevention. CfDCa. Chronic Kidney Disease in the United States, 2021. . In: US Department of Health and Human Services CfDCaP, editor. Atlanta, GA2021.
    1. Drew DA, Weiner DE, Sarnak MJ. Cognitive impairment in CKD: pathophysiology, management, and prevention. American journal of kidney diseases : the official journal of the National Kidney Foundation. 2019;74(6):782–790. doi: 10.1053/j.ajkd.2019.05.017. - DOI - PMC - PubMed
    1. Liu M, Li XC, Lu L, Cao Y, Sun RR, Chen S, et al. Cardiovascular disease and its relationship with chronic kidney disease. Eur Rev Med Pharmacol Sci. 2014;18(19):2918–2926. - PubMed
    1. Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet (London, England). 2020;395(10225):709–33. - PMC - PubMed