The Relationship between Health Literacy, Illness Perception, and Self-Management Adherence among Hemodialysis Patients in Indonesia

https://doi.org/10.56303/jhnresearch.v4i2.401

Authors

  • Sri Hartati Pratiwi Medical Surgical and Critical Nursing Department, Faculty of Nursing, Universitas Padjadjaran, Indonesia
  • Eka Afrima Sari Medical Surgical and Critical Nursing Department, Faculty of Nursing, Universitas Padjadjaran, Indonesia
  • Titis Kurniawan Medical Surgical and Critical Nursing Department, Faculty of Nursing, Universitas Padjadjaran, Indonesia

Keywords:

Health Literacy, Hemodialysis, Illness Perception, Self-Management, Adherence

Abstract

Hemodialysis patients' self-management is critical for maintaining their quality of life and minimizing complications. Patients' health literacy and perception of the disease are essential for their acceptance of the condition and treatment. However, the relationship between these variables and self-management among hemodialysis patients remains unclear. This study aims to identify the relationship between health literacy, perception of disease, and self-management among hemodialysis patients. This correlational study was cross-sectional design, with 129 hemodialysis patients consecutively recruited from a hemodialysis unit of a tertiary hospital in West Java, Indonesia. Data were collected using the Brief-Illness Perception Questionnaire (Brief-IPQ), the European Health Literacy Survey Questionnaire (HLS-EU-Q47), and the End Stage Renal Disease Adherence Questionnaire (ESRD-AQ). The data were analyzed using Pearson correlation analysis. Most of the patients had sufficient or excellent health literacy (74.4%), negative illness perception (50.4%), and low self-management practices (71.3%). Pearson’s correlation analysis revealed a positive correlation was found between health literacy and self-management practices (r = .189; ρ=0.032). Additionally, there was a negative correlation between illness perception and health literacy (r = -.27; ρ= .002) as well as between illness perception and self-management practices (r = -.762; ρ= .000). Positive illness perception and better self-management practices correlate with a higher level of health literacy. These findings highlight the importance for healthcare staff to facilitate positive illness perceptions and self-management practices, and to consider these factors as vital aspects in developing self-management education programs for ESRD patients.

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References

Usrds. 2017 USRDS Annual Data Report: Executive Summary [Internet]. [cited 2018 Dec 6]. Available from: https://www.usrds.org/2017/download/2017_Volume_1_CKD_in_the_US.pdf

Kementerian Kesehatan Republik Indonesia. Laporan Nasional Riskesdas 2018. 2019 [cited 2024 Mar 24]; Available from: https://repository.badankebijakan.kemkes.go.id/id/eprint/3514/1/Laporan%20Riskesdas%202018%20Nasional.pdf

3 th Annual Report Of Indonesian Renal Registry 2020. [cited 2024 Jun 3]; Available from: www.indonesianrenalregistry.org

Nagy E, Tharwat S, Elsayed AM, Shabaka SAEG, Nassar MK. Anxiety and depression in maintenance hemodialysis patients: prevalence and their effects on health-related quality of life. Int Urol Nephrol [Internet]. 2023 Nov 1 [cited 2024 Jun 13];55(11):2905. Available from: /pmc/articles/PMC10560136/

Sukartini T, Efendi F, Putri NS. A phenomenological study to explore patient experience of fluid and dietary restrictions imposed by hemodialysis. Journal of Vascular Nursing. 2022 Jun 1;40(2):105–11.

Loutradis C, Sarafidis PA, Ferro CJ, Zoccali C. Volume overload in hemodialysis: diagnosis, cardiovascular consequences, and management. Nephrology Dialysis Transplantation [Internet]. 2021 Dec 1 [cited 2024 Jun 9];36(12):2182. Available from: /pmc/articles/PMC8643589/

Himmelfarb J, Vanholder R, Mehrotra R, Tonelli M. The current and future landscape of dialysis. Nat Rev Nephrol [Internet]. 2020 Oct 1 [cited 2024 Jun 13];16(10):573. Available from: /pmc/articles/PMC7391926/

Van De Velde D, De Zutter F, Satink T, Costa U, Janquart S, Senn D, et al. Delineating the concept of self-management in chronic conditions: a concept analysis. BMJ Open [Internet]. 2019 Jul 1 [cited 2024 Jun 9];9(7). Available from: /pmc/articles/PMC6661649/

Yasin F, Khraim F, Santos M, Forgrave D, Hamad A. Factors influencing self-care management in adult hemodialysis patients: An integrative review. Qatar Med J [Internet]. 2024 [cited 2025 Apr 27];2024(1):12. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC11037095/

Moreels T, Van de Velde D, Goethals J, Vanden Wyngaert K, De Baets S, Nagler E, et al. Self-Management Interventions for Facilitating Life Participation for Persons with Kidney Failure A Systematic Review. Clinical Journal of the American Society of Nephrology [Internet]. 2024 Feb 1 [cited 2024 Jun 13];19(2):189–201. Available from: https://journals.lww.com/cjasn/fulltext/2024/02000/self_management_interventions_for_facilitating.10.aspx

Riegel B, Jaarsma T, Strömberg A, Clemmer E, Chair S. A Middle-Range Theory of Self-Care of Chronic Illness. 2012 [cited 2018 Dec 6];3(35):194–204. Available from: http://dx.doi.org/10.1097/ANS.0b013e318261b1bahttp://www.lww.com/http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-81836

Xu F, Zhuang B, Wang Z, Wu H, Hui X, Peng H, et al. Knowledge, attitude, and practice of patients receiving maintenance hemodialysis regarding hemodialysis and its complications: a single-center, cross-sectional study in Nanjing. BMC Nephrol [Internet]. 2023 Dec 1 [cited 2024 Jun 9];24(1). Available from: /pmc/articles/PMC10510168/

Boonstra MD, Reijneveld SA, Foitzik EM, Westerhuis R, Navis G, de Winter AF. How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies. Nephrology Dialysis Transplantation [Internet]. 2021 Jul 1 [cited 2024 Jun 9];36(7):1207. Available from: /pmc/articles/PMC8237988/

Muscat P, Weinman J, Farrugia E, Camilleri L, Chilcot J. Illness perceptions predict mortality in patients with predialysis chronic kidney disease: a prospective observational study. BMC Nephrol [Internet]. 2020 Dec 1 [cited 2024 Jun 9];21(1). Available from: /pmc/articles/PMC7727218/

Alharbi AA, Alharbi YA, Alsobhi AS, Alharbi MA, Alharbi MA, Aljohani AA, et al. Impact of Illness Perception on the Health-Related Quality of Life of Patients Receiving Dialysis: A Cross-Sectional Study. Cureus [Internet]. 2021 Jun 17 [cited 2024 Jun 9];13(6). Available from: /pmc/articles/PMC8285669/

Sabouri F, Rambod M, Khademian Z. The effect of positive thinking training on hope and adherence to treatment in hemodialysis patients: a randomized controlled trial. BMC Psychol [Internet]. 2023 Dec 1 [cited 2024 Jun 13];11(1). Available from: /pmc/articles/PMC9830796/

Kim S, Kim E, Ryu E. Illness Perceptions, Self-Care Management, and Clinical Outcomes According to Age-Group in Korean Hemodialysis Patients. Int J Environ Res Public Health [Internet]. 2019 Nov 2 [cited 2024 Jun 9];16(22). Available from: /pmc/articles/PMC6888085/

Sørensen A, den Broucke V. Measuring health literacy in populations: illuminating the design and development process of the European Health Literacy Survey Questionnaire (HLS-EU-Q) Item Type Journal Article. Citation BMC Public Health [Internet]. 2013 [cited 2024 Jun 11];13(1):948. Available from: http://dx.doi.org/10.1186/1471-2458-13-948

Rachmani E, Hsu CY, Nurjanah N, Chang PW, Shidik GF, Noersasongko E, et al. Developing an Indonesia’s health literacy short-form survey questionnaire (HLS-EU-SQ10-IDN) using the feature selection and genetic algorithm. Comput Methods Programs Biomed [Internet]. 2019 Dec 1 [cited 2024 Jun 11];182. Available from: https://pubmed.ncbi.nlm.nih.gov/31518767/

Broadbent E, Wilkes C, Koschwanez H, Weinman J, Norton S, Petrie KJ. A systematic review and meta-analysis of the Brief Illness Perception Questionnaire. Psychol Health [Internet]. 2015 [cited 2018 Nov 4];30(11):1361–85. Available from: http://dx.doi.org/10.1080/08870446.2015.1070851

Wu H, Zhao X, Fritzsche K, Salm F, Leonhart R, Jing W, et al. Negative illness perceptions associated with low mental and physical health status in general hospital outpatients in China. Psychol Health Med [Internet]. 2014 May 4 [cited 2025 Apr 25];19(3):273–85. Available from: https://pubmed.ncbi.nlm.nih.gov/23721418/

Rivera E, Levoy K, Clark-Cutaia MN, Schrauben S, Townsend RR, Rahman M, et al. Content Validity Assessment of the Revised Illness Perception Questionnaire in CKD Using Qualitative Methods. Int J Environ Res Public Health [Internet]. 2022 Jul 1 [cited 2024 Jun 11];19(14). Available from: https://pubmed.ncbi.nlm.nih.gov/35886505/

Rias YA, Abiddin AH, Huda N, Handayani S, Sirait HS, Pien LC, et al. Psychometric Testing of the Bahasa Version of the Brief Illness Perception Questionnaire among Indonesians with Type 2 Diabetes Mellitus. Int J Environ Res Public Health [Internet]. 2021 Sep 1 [cited 2024 Jul 17];18(18). Available from: /pmc/articles/PMC8469354/

Kim Y, Evangelista LS, Phillips LR, Pavlish C, Kopple JD. The End-Stage Renal Disease Adherence Questionnaire (ESRD-AQ): Testing The Psychometric Properties in Patients Receiving In-Center Hemodialysis. Nephrol Nurs J [Internet]. 2010 Jul [cited 2024 Jul 17];37(4):377. Available from: /pmc/articles/PMC3077091/

Evangelista LS, Phillips LR, Pavlish C, Kopple JD. The End-Stage Renal Disease Adherence Questionnaire (ESRD-AQ): Testing The Psychometric Properties in Patients Receiving [Internet]. [cited 2018 Dec 3]. Available from: https://cloudfront.escholarship.org/dist/prd/content/qt0sf9v9qk/qt0sf9v9qk.pdf?t=oo9n0t

Vaidya SR, Aeddula NR. Chronic Kidney Disease. The Scientific Basis of Urology, Second Edition [Internet]. 2022 Oct 24 [cited 2024 Jun 11];257–64. Available from: https://www.ncbi.nlm.nih.gov/books/NBK535404/

Melastuti E, Nursalam N, Sukartini T, Putra MM. Self-care Adherence in Hemodialysis Patients: A Structural Equation Modeling. Open Access Maced J Med Sci. 2022 Apr 15;10(B):1107–12.

World Health Organization. Self care for health: a handbook for community health workers & volunteers. 2017;

Gela D, Mengistu D. Self-management and associated factors among patients with end-stage renal disease undergoing hemodialysis at health facilities in Addis Ababa, Ethiopia. Int J Nephrol Renovasc Dis. 2018;11:329–36.

purba agavia kristi, Emaliyawati E, Sriati A. Self-Management and Self-Efficacy In Hemodialysis Patients. Journal of Nursing Care [Internet]. 2018 Jul 3 [cited 2024 Jun 11];1(2). Available from: https://jurnal.unpad.ac.id/jnc/article/view/16137

Hamza MA, Ullah S, Ahsan H, Ali W, Masud M, Ahmed A. Health literacy, illness perception, and their association with medication adherence in end-stage renal disease. Int Urol Nephrol [Internet]. 2025 Apr 4 [cited 2025 May 14];1–16. Available from: https://link.springer.com/article/10.1007/s11255-025-04472-8

Koenig T. IHS Political Science Series Working Paper 146 Managing Policy: Executive Agencies of the European Commission [Internet]. 2017 [cited 2018 Dec 3]. Available from: http://irihs.

Liu C, Wang D, Liu C, Jiang J, Wang X, Chen H, et al. What is the meaning of health literacy? A systematic review and qualitative synthesis. Fam Med Community Health [Internet]. 2020 May 14 [cited 2024 Jun 11];8(2). Available from: /pmc/articles/PMC7239702/

Shahid R, Shoker M, Chu LM, Frehlick R, Ward H, Pahwa P. Impact of low health literacy on patients’ health outcomes: a multicenter cohort study. BMC Health Serv Res [Internet]. 2022 Dec 1 [cited 2024 Jun 11];22(1):1–9. Available from: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-022-08527-9

Shaw SJ, Huebner C, Armin J, Orzech K, Vivian J. The role of culture in health literacy and chronic disease screening and management. J Immigr Minor Health. 2009;11(6):460–7.

Park OL, Kim SR. Integrated self-management program effects on hemodialysis patients: A quasi-experimental study. 2019;

Bhattad PB, Pacifico L. Empowering Patients: Promoting Patient Education and Health Literacy. Cureus [Internet]. 2022 Jul 27 [cited 2024 Jun 12];14(7). Available from: /pmc/articles/PMC9411825/

Pompey CS, Ridwan MN, Zahra AN, Yona S. Illness acceptance and quality of life among end state renal disease patients undergoing hemodialysis. Enferm Clin. 2019 Sep 1;29:128–33.

Hagger MS, Orbell S. The common sense model of illness self-regulation: a conceptual review and proposed extended model. Health Psychol Rev [Internet]. 2022 Jul 3 [cited 2024 Jun 12];16(3):347–77. Available from: https://www.tandfonline.com/doi/abs/10.1080/17437199.2021.1878050

Jansen DL, Rijken MJWM, Spreeuwenberg M, Grootendorst P, Dekker DC, Boeschoten FW, et al. Illness perceptions and treatment perceptions of patients with chronic kidney disease: different phases, different perceptions? Br J Health Psychol [Internet]. 2013 [cited 2018 Nov 1];18(2):244–62. Available from: http://onlinelibrary.wiley.com/doi/10.1111/bjhp.12002/abstracthttp://www.ncbi.nlm.nih.gov/pubmed/23126527http://www.nivel.eu

Opiyo RO, Nyasulu PS, Olenja J, Zunza M, Nguyen KA, Bukania Z, et al. Factors associated with adherence to dietary prescription among adult patients with chronic kidney disease on hemodialysis in national referral hospitals in Kenya: A mixed-methods survey. Ren Replace Ther. 2019 Sep 11;5(1).

Mollaoglu M, Candan F. Illness Perception and Hopelessness in Hemodialysis. [cited 2018 Oct 26]; Available from: https://www.peertechz.com/articles/illness-perception-and-hopelessness-in-hemodialysis.pdf

Cogley C, Bramham J, Bramham K, Smith A, Holian J, O’riordan A, et al. High rates of psychological distress, mental health diagnoses and suicide attempts in people with chronic kidney disease in Ireland. Nephrology Dialysis Transplantation [Internet]. 2023 Oct 1 [cited 2024 Jun 12];38(10):2152. Available from: /pmc/articles/PMC10539206/

Tsironi M, Tzavella F. Non Adherence Factors among Patients Undergoing Hemodialysis View project [Internet]. 2017 [cited 2018 Nov 1]. Available from: https://www.researchgate.net/publication/319968019

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Published

01-08-2025

How to Cite

1.
Pratiwi SH, Sari EA, Kurniawan T. The Relationship between Health Literacy, Illness Perception, and Self-Management Adherence among Hemodialysis Patients in Indonesia . J. Health Nutr. Res [Internet]. 2025 Aug. 1 [cited 2025 Sep. 13];4(2):474-83. Available from: https://journalmpci.com/index.php/jhnr/article/view/401

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