Journal of Health and Nutrition Research Vol.
No.
2, 2025, pg.
474-483, https://doi.
org/10.
56303/jhnresearch.
Journal homepage: https://journalmpci.
com/index.
php/jhnr/index e-ISSN: 2829-9760 The Relationship between Health Literacy.
Illness Perception, and Self-Management Adherence among Hemodialysis Patients in Indonesia Sri Hartati Pratiwi1*.
Eka Afrima Sari1.
Titis Kurniawan1 1 Medical Surgical and Critical Nursing Department.
Faculty of Nursing.
Universitas Padjadjaran.
Indonesia Corresponding Author Email: sri.
pratiwi@unpad.
Copyright: A2025 The author.
This article is published by Media Publikasi Cendekia Indonesia.
ORIGINAL ARTICLES
ABSTRACT
Submitted: 26 April 2025 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 selfmanagement 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-Q.
, 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 .
4%), negative illness perception .
4%), and low selfmanagement practices .
3%).
PearsonAos correlation analysis revealed a positive correlation was found between health literacy and selfmanagement practices .
= .
A=0.
Additionally, there was a negative correlation between illness perception and health literacy .
= .
A= .
as well as between illness perception and self-management practices .
= -.
A= .
Positive illness perception and better selfmanagement 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.
Accepted: 19 May 2025 Keywords:
Health Literacy.
Hemodialysis.
Illness Perception.
Self-Management.
Adherence.
This work is licensed under a Creative Commons Attribution-NonCommercialShareAlike 4.
0 International License Access this article online Key Messages:
Quick Response Code Positive illness perception and better self-management practices correlate with a higher level of health literacy.
Healthcare workers should provide interventions to enhance health literacy and patients' perceptions of disease, thereby improving adherence to self-management.
Sri Hartati Pratiwi.
Eka Afrima Sari.
Titis Kurniawan, .
GRAPHICAL ABSTRACT
INTRODUCTION
Chronic kidney failure is a non-communicable disease that continues to increase worldwide.
2013, the number of new cases of chronic kidney failure in the United States reached 117,162, an increase from 2012, which saw 363 new cases per million people per year .
Similarly, the incidence of chronic kidney failure in Indonesia has been rising.
According to the Regional Health Research (Riskesda.
data in 2018, the prevalence of chronic kidney failure among individuals over 15 years old reached 3.
8A .
2020, the Indonesian Renal Registry (IRR) reported 61,789 newly diagnosed chronic kidney failure patients and 130,931 active patients .
Patients with end-stage renal failure experience various symptoms caused by impaired kidney function, such as dysuria or anuria, edema, shortness of breath, ascites, anemia, pruritus, and more.
addition to physical symptoms, hemodialysis patients often face psychological symptoms like anxiety and depression .
To manage these issues, patients with end-stage renal failure must undergo renal replacement therapy, primarily hemodialysis in Indonesia, which reached 1,243 patients in 2015 .
Without treatment, patients may suffer from acid-base disorders, which can be fatal .
Hemodialysis patients are required to adhere to various treatments, including regular hemodialysis sessions, prescribed medications, fluid intake restrictions, and dietary control.
Numerous studies indicate that most hemodialysis patients struggle with adhering to fluid and sodium restrictions .
Excessive fluid intake can lead to weight gain, adversely affecting the patient's condition, such as increased blood pressure .
Non-adhere with therapy not only worsens patients' health but also leads to economic losses .
, as the cost of treatment escalates with deteriorating conditions.
To maintain their health, hemodialysis patients must practice proper self-management.
Van De Velde et al.
define self-management as daily activities that contribute to long-term health and well-being .
Hemodialysis patients who are not compliant in carrying out self-management can cause a decline in their health condition .
Self-management is crucial in managing chronic diseases, enhancing well-being, health, and physical and emotional stability .
Hemodialysis patients are expected to manage their health by limiting fluid and sodium intake, controlling their diet, engaging in appropriate physical activity, and managing stress.
Good health literacy is essential for hemodialysis patients to effectively engage in selfmanagement.
Health literacy plays a vital role in health care, disease prevention, and health promotion.
involves the patient's ability to find, understand, evaluate, and use health information.
Knowledge forms https://doi.
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56303/jhnresearch.
Sri Hartati Pratiwi.
Eka Afrima Sari.
Titis Kurniawan, .
the basis for behavior, and behavior rooted in adequate knowledge tends to be more sustainable.
Many hemodialysis patients need sufficient knowledge about diet, complications, and prevention methods .
Patients with high health literacy can improve their knowledge, decision-making abilities, and selfmanagement behaviors .
In addition to health literacy, a patient's perception of their disease significantly influences their behavior during treatment.
Illness perception refers to a patient's beliefs about their disease .
Negative perceptions can increase morbidity and mortality, decrease quality of life, and lead to non-adherence to medical therapies among hemodialysis patients .
Conversely, positive thinking about interventions can enhance hope and adherence to treatment .
Perceptions influence cognitive and emotional responses, shaping coping mechanisms and planning to manage the illness.
Hemodialysis patients with a positive perception of their disease can better control interdialytic weight gain .
Health workers play a crucial role in assisting hemodialysis patients with self-management.
They must implement various interventions to enhance patients' self-management abilities.
Given the importance of self-management in hemodialysis patients and the influence of health literacy and illness perception on adherence, research is needed to explore the relationship between these factors and selfmanagement practices.
METHODS
This research used cross sectional study design.
This descriptive correlational study aimed at identifying the relationship between health literacy, disease perception, and adherence to self-management among hemodialysis patients.
The target population consisted of chronic kidney disease (CKD) patients undergoing hemodialysis at a type A hospital in Indonesia.
On average, 129 patients visit this hospital per The sampling technique used in this research was consecutive sampling.
After obtaining permission from the hospital and ethical approval, the researcher approached eligible patients with the assistance of the head nurse of the hemodialysis unit.
The inclusion criteria were kidney failure patients undergoing hemodialysis with stable vital signs.
The exclusion criteria were patients who had just undergone their first hemodialysis session.
The research was conducted only on patients who had undergone hemodialysis more than once, as measuring self-management in patients undergoing their first session would be challenging.
Patients were informed about the research aims and procedures, and those willing to participate were asked to sign an informed consent form.
Participants were recruited until the target of 129 was reached.
The variables in this study included health literacy, disease perception, and adherence to selfmanagement among hemodialysis patients.
The three variables are mutually independent of each other.
This study will examine the relationship between these three variables.
The instrument used to measure patient health literacy in this study was the European Health Literacy Survey Questionnaire (HLS-EU-Q.
, developed by the Health Literacy Consortium.
It consists of 47 questions using a Likert scale with values ranging from 0 to 5.
Patient health literacy was categorized as inadequate .
Ae.
, problematic .
Ae.
, moderate .
Ae.
, and sound .
Ae.
This questionnaire has been translated into Indonesian .
Perceptions of disease among hemodialysis patients were identified using the Brief Illness Perception Questionnaire (Brief-IPQ).
Respondents rated their perceptions from 1 to 10 on eight questions and provided one open-ended response about the three causes of the disease they believed most.
Higher scores indicated more negative perceptions .
Negative illness perception is the patient's negative emotional reaction to their illness .
This questionnaire has been validated for use with CKD patients .
, and the Bahasa Indonesia version has been proven valid and reliable .
To identify patient adherence in self-management, the End-Stage Renal Disease Adherence Questionnaire (ESRD-AQ) was used.
This questionnaire consists of five sections: general information, hemodialysis measures, medication, fluids, and diet.
This questionnaire consists of 46 questions, which have different points for every item .
rom no value to 50, 100, 150, and .
The minimum total score is 0, and the maximum is 1200.
Higher scores indicate better patient compliance.
The ESRD-AQ has been validated, showing an average item-level content validity index (I-CVI) of 0.
99 and intra-class correlation coefficients (ICC.
ranging from 0.
83 to 1.
The questionnaire used in this research was backtranslated into Indonesian and underwent face validity assessment.
https://doi.
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Sri Hartati Pratiwi.
Eka Afrima Sari.
Titis Kurniawan, .
Data were collected by asking the respondents to complete a questionnaire while undergoing or waiting for hemodialysis.
Respondents filled out the questionnaire themselves, with the researcher available to provide explanations if they needed help understanding the questions.
The variables in this research, such as health literacy, perceptions of hemodialysis patients, and compliance with selfmanagement, were treated as ordinal variables.
The relationship between health literacy, perception of illness, and patient adherence to self-management was tested using pearson correlation analysis using numerical data in each variable.
CODE OF HEALTH ETHICS
This research received ethical approval from Universitas Padjadjaran's Research Ethics Commission (No.
591/UN6.
KEP/EC/2.
After gaining ethical approval, the researcher, assisted by the head nurse of the hemodialysis unit, approached eligible patients.
The researcher explained the research procedures and sought informed consent from the respondents.
RESULTS
Respondent characteristic data included age, occupation, educational level, and length of time undergoing dialysis.
Most respondents were over 45 years old .
11%, (M SD = 49.
64%), had a senior high school education .
%), and had undergone dialysis for 1 to 5 years .
84%, (M SD = 4.
Hemodialysis patient health literacy, illness perception, and selfmanagement adherence based on respondent characteristics are presented in Table 1.
Respondents aged <45 years, 77.
4% had excellent health literacy, 53.
3% had negative perceptions of the disease, and 77.
had low adherence in carrying out self-management.
Of respondents aged > 45 years, 72.
6% had good health literacy, 51.
2% had positive perceptions of the disease, and 67.
9% had low adherence in carrying out self-management.
5% of respondents who worked had excellent health literacy, 58.
8% had negative perceptions of the disease, and 83.
3% had high adherence in carrying out self-management.
7% of unemployed respondents had good health literacy, 52.
6% had a positive perception of the disease, and 4% had low adherence in carrying out self-management.
2% of respondents who underwent hemodialysis for <5 years had excellent health literacy, 50% had a positive perception of the disease, and 7% had low adherence in carrying out self-management.
1% of respondents who underwent hemodialysis for >5 years had good health literacy, 50.
8% had negative perceptions of the disease, and 8% had low adherence in carrying out self-management.
Table 1.
RespondentsAo characteristics and their correlation with health literacy, illness perception, and self-management practices Characteristics Age (M SD = 49.
< 45 years old > 45 years old Total Occupation Actively work Unemployed Total Educational Level Elementary Junior High school Senior high school University (%) Health Literacy .
edian: 27.
min: 22.
max: 34.
Illness Perception .
edian: 44 min: 35 max: .
Self-management Adherence .
edian: 1000 min: 750 max: 1.
Low High n (%) n (%) Sufficient n (%) Excellent n (%) Negative n (%) Positive n (%) 45 .
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Eka Afrima Sari.
Titis Kurniawan, .
Characteristics Total Length of Hemodialysis (M SD = 4.
18 0,.
< 5 years > 5 years Total
(%)
Health Literacy .
edian: 27.
min: 22.
max: 34.
Illness Perception .
edian: 44 min: 35 max: .
Sufficient n (%) 33 .
Excellent n (%) 96 .
Negative n (%) 65 .
Positive n (%) 64 .
Self-management Adherence .
edian: 1000 min: 750 max: 1.
Low High n (%) n (%) 92 .
Table 2 show that the relationship between health literacy, perceptions of disease, and patient adherence to self-management.
According to the data in Table 2, there is a relationship between health literacy and adherence to self-management.
Further analysis found a positive correlation between patients' health literacy and self-management practices .
A=.
Additionally, a negative correlation was found between patients' health literacy and illness perception .
= -.
A=.
and between patients' illness perception and self-management practices .
= -.
A=.
This indicates that patients with higher health literacy and a more positive perception of illness tend to report better self-management Patients with higher health literacy also tend to have more positive illness perceptions (Table .
Furthermore, there is a correlation between the perception of illness and adherence to patient selfmanagement.
The Pearson correlation between perception and adherence is negative, indicating that a higher perceived value corresponds to a more negative patient perception.
This contrasts with adherence, where a higher perceived value indicates better adherence.
Table 2.
Relationship between patientsAo health literacy, illness perception, and self-management practices .
= .
Correlation Health literacy and Illness perception Health literacy and Self-management adherance Illness perception and Self-management adherance DISCUSSION Hemodialysis can cause various physical signs and symptoms.
According to the Kidney Disease Improving Global Outcomes (KDIGO) guidelines, the glomerular filtration rate (GFR) is used to assess kidney damage and determines the severity of these signs and symptoms .
The patient's age is another contributing factor.
Hemodialysis patients may experience anemia, fatigue, anxiety, decreased concentration, disorientation, tremors, weakness in the arms, pain in the soles of the feet, and changes in To manage these symptoms, hemodialysis patients must undergo various treatments, including hemodialysis, medication, fluid and dietary restrictions .
Hemodialysis patients need to engage in self-management practices to ensure their treatment aligns with their expectations and goals.
Self-management involves individuals, families, or communities promoting health, preventing disease, maintaining health, and coping with illness and disability, with or without support from healthcare workers.
This includes health promotion, disease prevention and control, self-medication, providing care to dependent individuals, seeking help from healthcare workers, and rehabilitation, including palliative care .
According to the research results, the majority of respondents were not adhering to the selfmanagement schedule.
Patient adherence to the schedule for carrying out hemodialysis is good.
The most challenging thing for hemodialysis patients to do is limit fluid intake.
Patients perceive that controlling their thirst is more difficult than controlling their food intake.
According to the doctor's recommendations, medication compliance for hemodialysis patients is still lacking.
Hemodialysis patients often find it difficult to consume large amounts of medication, even though, on the other hand, they have to maintain fluid intake.
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Eka Afrima Sari.
Titis Kurniawan, .
Various factors, including knowledge, self-efficacy, social support, and depression, influence hemodialysis patients' ability to carry out self-management .
Most hemodialysis patients did not adhere adequately to self-management, which can result in worsening conditions, the emergence of complications, and a decreased quality of life.
Therefore, implementing various interventions to enhance patient adherence is essential.
Emotional support, patient education about treatment and care, as well as regular health progress evaluations are strategies that should be implemented to enhance patient self-management.
This can improve the cooperation between patients and healthcare professionals .
Based on this study's data, there is a relationship between health literacy and adherence in selfmanagement .
This result is similar to another study among chronic kidney disease patients in Pakistan .
There is a positive correlation between health literacy and medication adherence .
= 0.
The differences in the r value can relate to a larger sample size or different population cultures.
Health literacy involves a person's ability to search for, process, and understand basic health information and It plays a crucial role in healthcare, disease prevention, and health promotion.
Health literacy includes the patient's ability to find health information, understand and evaluate it, and use it effectively .
Health literacy includes three major elements: knowledge about health, health services, and health processing and using information in various formats related to health and health services.
and the ability to maintain health through self-management and collaboration with health care providers .
Patients with good health literacy tend to be more adherence in self-management.
Based on the research results, the majority of respondents in this study had moderate health A person's level of health literacy can influence their health condition .
Various social and cultural factors, such as personal beliefs, value systems, and traditions, can influence a person's health literacy, perception, and acceptance of health information .
The ability of hemodialysis patients to carry out self-management is influenced by several factors, including knowledge .
Knowledge is the basis for determining behavior, and behavior based on adequate knowledge tends to be sustainable.
Patients can acquire knowledge if they are able to locate and comprehend health information, which enhances their selfmanagement abilities.
The patient's last education can affect their adherence to self-management.
Low health literacy frequently occurs in patients who are elderly, have low education, or come from low socioeconomic Most patients get health information from doctors and other health workers.
In addition, there are other sources of information, such as pamphlets, the internet, books, and other patients.
The elderly often experience decreased cognitive abilities, affecting their capacity to find, understand, and use health information.
Patient education can affect the patient's health literacy .
This study indicates that the patient's health literacy can influence their adherence to self-management.
Patients with higher education have greater access to information sources and engage in more discussions with healthcare workers.
Most respondents had completed senior high school, a higher level of education than basic education in Indonesia.
This educational background enables patients to access various health information sources and understand the health information they receive.
The study revealed a significant relationship between patient adherence to self-management and perceptions of disease .
This is similar with another study that a negative correlation between illness perception and medication adherence .
= Ae0.
Adherence in their study specific to medication adherence.
This is related with differences r value.
Hemodialysis patients' perception of disease is critical, as it impacts treatment adherence, functional improvement, and quality of life.
Patients perceive their condition through cognitive and emotional responses to symptoms and disease.
Their understanding and acceptance of the disease affect their coping and adaptation .
When faced with a disease, an individual tends to respond in a specific Understanding patients' beliefs about their disease and necessary treatment helps them provide adaptive responses.
The patient's perception of the disease forms the basis for developing treatment goals to improve adaptive function .
Most respondents in this study had a negative perception of their disease.
Negative perceptions https://doi.
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can worsen their condition and affect their quality of life.
Factors such as the patient's experience or knowledge of medical intervention and their condition status influence their perception.
Short procedures can increase patients' knowledge and confidence in carrying out treatment .
Although most respondents had been on dialysis for 1Ae5 years and should have a positive perception, the differences between patients with positive and negative perceptions were minimal.
Education level, such as high school or equivalent education, influences patients' knowledge about their disease and treatment.
Hemodialysis patients face various stressors related to their disease and treatment.
Diet and fluid restrictions are challenging, and patients may perceive personal, social, and systemic barriers affecting Additionally, most patients do not receive sufficient support in managing diet and fluid restriction .
Hemodialysis patients also frequently experience stressors such as itching, weakness, psychological disorders, feelings of uncertainty about the future, guilt towards family, and other social problems .
Psychological disorders, including depression, anxiety, sadness, low self-esteem, sleep disorders, and pessimism about the future, are common among hemodialysis patients .
These conditions affect patients' emotional status and acceptance of the disease and its treatment, as well as interpersonal relationships within the family and social life.
A large number of respondents with negative perceptions of the disease can increase morbidity and mortality rates, reduce quality of life, and lead to non-compliance with medical therapies .
This impacts treatment outcomes for hemodialysis patients.
Therefore, patients require social and family support to enhance their acceptance of the disease and its Healthcare workers, especially nurses, should help patients improve their health literation and perception of their illness.
Programs carried out by nurses to improve patients' perceptions, such as counseling and peer group activities, can be beneficial.
There are many interventions that can improve knowledge and health literacy such as teach-back methods.
The strength of this study lies in its focus on hemodialysis patients, measuring the relationship between health literacy, illness perception, and selfmanagement adherence.
However, the study has limitations, including the use of a self-management adherence instrument in Bahasa Indonesia that lacks construct validity and reliability testing.
CONCLUSION
Hemodialysis patients must engage in self-management for effective treatment.
This study describes higher health literacy and more positive illness perception correlating with better selfmanagement.
Non-adherence with self-management can lead to deteriorating conditions and decreased quality of life.
Healthcare workers should provide interventions to enhance health literacy and patient perceptions of disease, thereby improving adherence to self-management.
Comprehensive education strategies and motivation can serve as effective interventions.
FUNDING
This research has received funding from a research grant held by Padjadjaran University ACKNOWLEDGMENTS The researcher would like to thank Universitas Padjadjaran for facilitating and funding this research through the university research grants.
CONFLICTS OF INTEREST
The author declares no conflict of interest.
REFERENCES