INTRODUCTION
Chronic kidney disease (CKD), one of the representative chronic diseases of childhood, is a disease in which kidney function is irreversibly reduced [1]. The prevalence of CKD in children in South Korea is 3.7 per million, and the number of children requiring dialysis treatment is 2.6 per million. The causes of CKD in children are glomerular nephritis (41%), chronic pyelonephritis (25%), renal dys-plasia (9%), hereditary kidney disease (8%), secondary glomerular disease (6.9%), and others (10%) [2].
Childhood is a period during which growth and age- appropriate developmental tasks must be achieved. CKD induces hormonal imbalances due to decreased kidney function and interferes with the secretion of growth hor-mones, causing growth delays. These physical changes can lower a child's self-esteem and increase emotional instability. Consequently, CKD can lead to changes in physical appearance or physical function, causing emotional problems such as depression, anxiety, decreased self-esteem, sadness, and fear. [3,4]. Furthermore, continuous outpatient visits, drug use, dietary restrictions, and radical exercise restrictions in daily life make patients feel different from others and alienated in their relationships with their health peer group; it also affects social development formed through peer relationships [5,6]. Thus, CKD affects various physical, emotional, and social aspects of children, lowers their quality of life, and hinders normal growth and development.
Children with CKD try to accept and overcome their illness when experiencing long-term deterioration by finding relief from the constraints of the disease. However, if coping is inappropriate in daily life, recurrence is experienced, or the patient's condition worsens. Due to the nature of CKD, children must live with the disease from the time of diagnosis to adulthood; therefore, it is important to cultivate self-management skills to adapt positively to daily life [6,7]. Children with CKD must manage their condition through self-care, active participation, and take responsibility for their daily lives through insight and control. Their self-management includes following instructions from medical personnel as well as efforts such as diet control, health management, exercise, and medication administration.
Self-management can be defined as behavior that as-sumes responsibility for one's own behaviors and leads to the desired direction to achieve a goal [8]. Humans inhabit social and physical environments and are designed to lead their environment actively in the desired direction. Humans do not respond passively to their situation. To this end, self-management is defined as a process that leads to desired internal and external results by adopting a psychological behavioral strategy to manage behavior [9]. Based on these conceptual definitions, studies have been conducted using complex concepts [10] of self-life management, such as time management, physical strength management, interpersonal management, and academic management, which are tangible and intangible resources in daily life.
In nursing, self-management is the process of the early detection and treatment of diseases, disease prevention, health maintenance, and promotion at the primary health management level [11]. Therefore, most nursing researchers study self-management as a concept of disease management behavior.
Disease management behavior targeting diabetic patients among adult chronic patients has been researched [12-14]. In children, research has been conducted on the self-management of chronic diseases [15-17]. Adults with CKD manage their health according to established self-management habits. Their extensive experience with the disease allows them to better accept their condition. Furthermore, they have more advanced skills in managing the stress caused by their illness [18]. Childhood is a period in which rapid growth and development occur and life habits leading to long-term health are established. It is important to establish the concept of self-management in children with CKD by considering the nature of their disease and their developmental situation, which differ from those of adults.
Therefore, it is necessary to define the self-management strategies that reflect the disease features in children with CKD. Walker and Avant's concept analysis method is suit-able for this study as it systematically defines and analyzes the attributes of a concept through clear procedures. Com-pared to other analysis methods, this approach enhances the reliability and validity of research outcomes by ensuring a clear definition of concepts. The concept analysis results can provide specific guidelines for evaluating and improving the self-management abilities of children with CKD in clinical practice. Furthermore, it can enhance the theoretical understanding and practical skills of students in nursing education [19]. Therefore, this study aims to define self-management strategies for children with CKD using Walker and Avant's concept analysis and to provide foundational data that can be utilized in clinical practice and education.
1. Research purpose
This study aimed to provide the theoretical framework necessary for nursing intervention for self-management in children with CKD by identifying the clear properties of the concept and determining the antecedent and consequence factors through a concept analysis of children with CKD. The research objectives were as follows:
To confirm the properties of the concept and present examples through concept analysis of self-manage-ment used in nursing, psychology, education, philosophy, and other disciplines.
To confirm the antecedent factors, consequence factors, and empirical criteria of the concept of self-management and present a definition through a concept analysis of the way in which it is used in nursing, psychology, education, philosophy, and other disciplines.
METHODS
1. Research Design
This study identified the properties of self-manage-ment, antecedent factors, and consequence factors by applying Walker and Avant's concept analysis method. This procedure is illustrated in Figure 1.
2. Research Target
The scope of the literature review included dictionary definitions of self-management and literature in human-ities and social sciences, including education, psychology, philosophy, public health, and nursing. We used PubMed, CINAHL, Research Information Sharing Service (RISS), and Korean Studies Information Service (KISS) databases to conduct an in-depth analysis and elaborate on concepts. The search terms included “self-management,” “self-management with chronic disease,” and “self-management in children with chronic kidney disease.” Using the search terms “self-management” AND “chronic disease” AND “children with CKD,” a literature review was conducted on papers published in domestic and international journals as well as domestically published books.
This study included participants aged 0∼18 years to pri-marily focus on children. Data from adults and the elderly were excluded as they were outside the scope of this study. The age range of 0∼18 years was selected based on developmental stages defined in previous research (refer-ence) and aligns with the study's objective of understanding growth patterns from infancy to late adolescence [4,5,7]
To collect relevant data for confirming the use of this concept, we selected papers published in academic journals between January 2000 and February 2024. For international literature, 72 PubMed and 34 CINAHL articles were searched. For domestic literature, 62 RISS and 51 KISS articles were searched. After excluding 32 duplicates, the titles and abstracts of 105 articles were reviewed, and 27 articles were selected after excluding 78 articles that were not related to the concept (Figure 1).
3. Data Collection and Analysis
The researchers meticulously reviewed 27 selected papers, examining the distinct properties of self-manage-ment within each domain and proposing cases based on these insights. Moreover, they identified the antecedent factors, consequence factors, and empirical criteria of self-management in children with CKD from the analyzed literature, culminating in a comprehensive provisional definition.
RESULTS
1. Literature Review on Self-management in Children with CKD
1) Dictionary definition of self-management
Self-management has various meanings. In Chinese characters, self-management literally means “seeking sound maintenance or growth by controlling one's body.” The self-management process can manage and adjust behavior by controlling environmental conditions for desirable changes [8]. The nursing dictionary defines it as “individuals’ preventive, therapeutic health activities performed by individual patients under contact with medical staff”[11]. Taken together, the dictionary definition identi-fies self-management as a process in which humans can control a given environment for their health, as opposed to submitting to external control, and are responsible for their behavior.
2) Self-management in adjacent academic literature
Self-management can be used in various areas, both at the conceptual level and within the scope of self-manage-ment. In academia, self-management is approached from three perspectives [9]. From a philosophical perspective, humans are influenced by social and physical environments, and have the ability to control them. Humans control themselves by controlling the external environment rather than being controlled by the external environment. Humans are therefore creative beings who actively lead the environment in their desired direction; self-manage-ment is a process that occurs throughout their lives [20].
Self-management viewed through human behavior can grow as a human being who can control their surrounding environment to control elements such as internal and external results to achieve their goals. Finally, the self-management perspective through behavior is the process of learning a new adjustment process based on the principles of behavioral modification or psychological concepts [21].
The goal is to enable children to apply the principles of learning to their own behavior and acquire the ability to apply them by understanding the principles of self-management. In other words, they focus on improving their skills and abilities to control their environment [9]. Based on these perspectives, studies applying concepts related to self-management have been conducted in various academic areas [22].
For example, for athletes and dancers who need to reach their goals, self-efficacy, as a psychological and behavioral strategy to maintain the best condition when faced with daily life, training, and competition, is an individual internal characteristic. Individuals make efforts while taking responsibility for their actions as an external characteristic and controlling their environment during the preparation process; actual combat can be said to be self-management [21,22].
In pedagogy, self-management can be expressed as a process of achieving the goal of academic performance while managing daily life, such as time, physical strength, interpersonal relations, and academic results, with a positive ego concept and self-efficacy. Self-management can be defined as reaching a goal while consuming and creating tangible and intangible assets and adjusting, compen-sating, and controlling one's behavior in a learning situation [23].
3) Self-management in nursing
In nursing, concepts similar to self-management such as self-regulation, self-control, and self-care are often used. However, self-management is a broader concept that em-phasizes external factors more than other terms [16]. Self-nursing refers to specific direct care activities that focus on particular health issues or conditions. In contrast, self-management encompasses broader health maintenance and lifestyle activities, including self-nursing. It focuses on overall health management and comprehensive care practices. Self-management is a complex process influenced by various factors that contribute to illness management. For children with CKD, psychosocial self-effi-cacy is a crucial antecedent that promotes positive attitudes [24]. The higher the self-efficacy, the more effectively the child regulates their behavior, which is linked to a positive outlook on life. This attitude serves as an internal motivation to overcome feelings of fear, anxiety, frustration, and insecurity, which often accompany chronic illness [16,24,25].
Both family and peer groups play significant roles as environmental factors in the self-management of children with CKD. Family members provide care and support from the time of diagnosis and play a key role in a child's daily self-management. As children grow, they spend more time outside the home. As such, peer groups have a more significant influence than their family. Peer groups can affect a child's self-management both positively and negatively. Although peers do not directly enforce self-management, they create an indirect environment that affects the child's ability to carry out self-management behaviors [3,6,17,26,27]. For children with CKD, self-management involves specific behaviors related to managing their illness, such as taking medications on time, avoiding strenuous physical activity, and maintaining a low-so-dium diet. The process of self-management begins with experiencing the limitations caused by the illness and making efforts toward normalization. Children attempt to restructure their daily lives by incorporating specific illness management practices into their routines. Ultimately, as these behaviors become habitual, the child gains the ability to manage their illness independently [4,6,7].
In conclusion, self-management in children with CKD results from the complex interplay of internal factors (such as overcoming a sense of unsafe self-control caused by CKD and positive attitudes), environmental factors (family and peer groups), and behavioral factors (specific illness management actions). This process enhances children's ability to self-direct their care, allowing them to maintain their health autonomously in their everyday lives.
2. Preliminary Criteria and Properties of Self-Management in Children with CKD
By reviewing an array of literature in which the concept of self-management in children with CKD was used, the preliminary criteria and properties were confirmed.
1) Preliminary criteria for self-management in children with CKD
Managing a situation that can cause relapses while rec-ognizing the current ill body as it is and cherishing it.
It is necessary to increase self-efficacy and adopt a proactive attitude towards life. This helps in trusting one's abilities and maintaining a proactive stance in life. One must overcome the unstable sense of self-control caused by frustration, fear, tension, and depression due to CKD. This contributes to maintaining mental health and stabi-lizing the self. Additionally, it is important to benefit from peer support that has an indirect positive effect on CKD management. This allows for the exchange of necessary information and emotional support. Receiving family support is also essential. Family support positively impacts CKD management and helps in providing emotional stability and overall well-being. One must control their daily routine while adapting to physical activity, school life, and treatment methods according to their physical state. This is important for managing daily life well and maintaining health. Finally, it is important to actively manage the disease by setting intentional limits. This includes deciding what foods to eat or avoid and choosing activities that do not put too much strain on the body, thereby effectively managing the disease (Table 1).
Table 1.
Preliminary Criteria for Self-management in Children with CKD
2) Checking the properties of children with CKD
Self-management in nursing, as obtained through the above literature review, can be divided into internal, environmental, and behavioral dimensions. The internal dimension includes a positive attitude toward life and overcoming a sense of unsafe self-control caused by CKD, while the environmental dimension includes support from peer groups and families. The behavioral dimension includes controlling one's daily routine and self-directed disease management behavior, which appear to be properties:
3. Cases of Self-management in Children with CKD
1) Model cases
The model case included all the key attributes of self-management identified in this study: a positive attitude toward life, overcoming unstable self-control due to CKD, peer and family support, self-control in daily life, and self-directed disease management behavior.
A, diagnosed with CKD at the age of 10, is now a 19-year-old college student who has experienced three relapses and is currently undergoing outpatient treatment. The limitations in her daily life and the appearance and worsening of symptoms due to the disease cause constant tension, fear of never escaping the disease, despair, and depression due to the uncertainty of the disease. Frequent relapses and indirect experiences caused A to realize that the disease requires active management, not just treatment, and motivated her to manage her disease herself. She developed an internal motivation to manage her disease and an external desire to enjoy a normal life like her friends (positive attitude toward life). Support from family and friends has been of great help in overcoming instability in self-control. Her family followed a low-sodium diet and excluded difficult tasks expected from her, thereby providing significant support (family support). Close friends ordered separate meals for her, acting as a strong support system that helped her feel less isolated (peer support). Her parents’ continuous care and attention were also of great help. Recognizing her situation objectively, she developed an intention to manage her CKD, leading to active coping. Through active behaviors in daily life, she ad-hered to the disease treatment and adjusted her diet, physical activity, and school life (self-control of daily life). Through these adaptation processes, A controlled relapse-inducing situations, formed healthy habits, and actively managed her disease (self-directed disease management behavior).
2) Counter example
A counterexample refers to a case that does not exhibit any attributes of the identified concept and instead includes opposite characteristics. In this study, the counterexample lacked all attributes related to CKD management in children, such as a positive attitude toward life, overcoming unstable self-control due to chronic illness, parental and peer support, self-regulation of daily life, and self-directed management of CKD.
B, a patient diagnosed with nephrotic syndrome at the age of 11 years is now 16 years old and has experienced two relapses. He is currently undergoing outpatient treatment. His main symptoms include hematuria, proteinuria, edema, and purpura. Factors such as overexertion, poor medication adherence, and failure to maintain dietary restrictions worsen his condition. Consequently, B experiences limitations in daily life and the constant appearance and exacerbation of his symptoms, leading to a persistent state of tension, fear that he will never escape the disease, a sense of hopelessness, and depression due to the uncertainty of the illness. This all contributes to unstable self-control. B struggles with the challenge of having to re-frain from eating his favorite food during a period of rapid physical growth and the frustration of being unable to engage in sports activities. He also faces daily inconveni-ences, such as the need to take medication on time and the inability to socialize with his peers. These restrictions make him feel inferior as he believes that his life would be better if he was not sick. The constant tension he experiences due to frequent relapses and the feeling that his condition is not improving reinforces his fear of never escaping the disease, leading to frustration and depression. In the early stages of his illness, B was unable to recognize his symptoms or aggravating factors independently, and often relied on others to identify them. During this period, his self-management was mostly passive, following parental control and instructions regarding diet, activity restrictions, medication adherence, and other aspects of daily life related to disease management.
3) Borderline case
A borderline case includes most of the attributes of the concept but does not encompass all of them. If the missing attributes are present, it can be considered a model case. The borderline case presented in this study includes a positive attitude toward life, overcoming unstable self-control due to chronic illness, self-regulation of daily life, and self-directed management of CKD, but lacks the attributes of parental and peer support. Therefore, it does not fully include all self-management attributes of children with CKD.
C, a 17-year-old girl diagnosed with nephrotic syndrome four years ago, is currently receiving outpatient treatment. Through repeated hospitalizations and relapses, C has become aware of the seriousness of the disease and is able to recognize situations that worsen the condition, such as overexertion, catching a cold, not following dietary restrictions, and neglecting her medication. By becoming aware of the symptoms and aggravating factors, C actively seeks more information about the illness through online research and has become more cautious in her daily life by setting intentional limits to avoid physical strain. While spending time with healthy friends, C realized that her condition was not improving. She learned to accept the situation. By making realistic compromises, C gained con-fidence in being able to manage her body independently. During this process, she developed a positive mindset with the hope of being cured after adolescence and a positive ac-ceptance of reality, reflecting a positive attitude toward life. C also overcame the anxiety and fear caused by frequent relapses and hospitalizations, demonstrating that she has overcome unstable self-control. C desires to live a normal life like her healthy peers, longs to be free from medication, and continues to manage her disease through self-directed health behaviors. However, due to the lack of parental and peer support, this case does not fully encompass all the attributes of self-management in children with CKD.
4) Related cases
A related case refers to a case that shares similarities with the concept being analyzed but lacks key attributes, resulting in a different meaning from the concept being studied.
D, a 16-year-old boy, was diagnosed with nephrotic syndrome at the age of 11 years and is currently undergoing outpatient treatment. Despite experiencing weight gain due to medication, D accepted it with the belief that “things will be fine once I stop taking the medication.” Similarly, the missed schoolwork caused by hospitalization did not worry him much, as he thought, “I can make it up later.” He did not view these challenges as having a significant impact on his future. Instead, his main concern was that his current daily life would not be burdened by the limitations caused by the disease. Frequent relapses made him more cautious for a while. However, shortly after being discharged, D would return to his normal routine with his peers. When the disease relapsed, he would become cautious again, thus managing his illness by se-lectively controlling his actions. Disease management, including dietary control, physical activity, and school-life adjustments, was performed passively. D lived away from his parents, under the care of his sisters, and did not exhibit any signs of personal growth as a result of his illness.
4. Antecedent Factors and Result for the Concept of Self-management in Children with CKD
Preceding factors refer to events that must occur before the occurrence or things that must precede them. Results refer to the things or events that occur as a result of the concept of self-management. Therefore, when the antecedent factors of the concept and results are determined, it is useful to clearly analyze the properties of the concept [18]. Children with CKD experience symptoms of kidney disease, such as swelling and changes in urine, including hematuria and proteinuria, worsening after catching a cold, worsening and relapsing after excessive activities, and various restrictions during treatment as an antecedent factor of self-management.
As a result of self-management, children with CKD become more dedicated to their studies in daily life, experience mental growth by positively perceiving themselves despite their illness, develop healthy habits through con-sistent health behavioral practices, and exhibit resilience (Figure 2, Table 2)
Table 2.
Concept Analysis of Self-management in Children with Chronic Kidney Diseases Using Walker and Avant's Method
5. Empirical Criterion
Checking the empirical criterion on the properties of concept analysis involves identifying whether a certain concept exists in reality, and whether it is a classification or scope of a phenomenon [18]. Since the empirical criterion allows the determination of new feasibility, checking and observing the existence of the concept is a useful stage and can be used effectively in developing tools [18]. The empirical criterion identified in this study was measured through self-management tools for adults with chronic diseases.
Self-management in adults with chronic diseases is con-ceptualized into four areas: 1) knowledge of health conditions and treatment; 2) knowledge, therapeutic partner-ship, symptom recognition, and management; 3) symptom recognition and management; and 4) management of the impact of the disease on physical function, emotions, and interpersonal relationships [27,28].
6. Definition of Self-management in Children with CKD
The internal dimension includes overcoming an unstable sense of self-control caused by CKD and maintaining a positive attitude toward life. The environmental dimension encompasses support from peers and family members. The behavioral dimension is characterized by the ability to self-regulate daily routines and engage in self-directed disease management activities.
Self-management in children with CKD can be defined as “overcoming the unstable sense of self-control caused by chronic kidney disease through a positive attitude toward life, while receiving support from peers and family in their environment, and autonomously managing their chronic illness by taking control of their daily lives.” (Figure 3).
DISCUSSION
Children with CKD who have managed the disease with the care of their family in the early stages of the disease should be able to control their disease themselves as they grow up. Children with CKD need to manage their health independently to adapt to daily life and achieve growth milestones. Therefore, their self-management is considered a crucial self-nursing factor. It plays a key role in helping children recognize their health status, manage symptoms through appropriate actions, and smoothly continue their daily activities. Furthermore, self-manage-ment is essential for achieving healthy physical development and maintaining physical and emotional stability during the growth process.
Based on the positive attitude toward life and self-effi-cacy identified in the literature review, self-management in children with CKD functions as a drive leading to disease control behavior, which allows them to overcome their current situation and consider risk as an opportunity. As noted in previous studies [16,25], internal growth, self-efficacy, and a positive self-concept are important factors in the self-management process of children with CKD. These are also important as factors in enhancing self-management.
Children with CKD do not recognize themselves negatively but try to overcome their illness by accepting their current situation positively. Therefore, self-management for children with CKD is a process of self-re-establish-ment. Thus, it is important to provide care for children to re-establish themselves in the interest of internal maturity.
Previous studies have shown that family [6,17,26] and friends [3,6,27] have both positive and negative effects on self-management. Personnel environments that surround children with CKD include emotional and social support from family and friends. They are cared for by family members such as parents from the time of diagnosis, are excluded from hard work, and follow a diet focusing on their needs. Family and friends often offer advice because they know the children's state and consider their needs when spending time together. Support from these personnel resources aids the self-management of children with CKD in a desirable way and acts as characteristics that can indirectly lead to self-management in their living environments. Therefore, self-management in children with CKD requires an interventional approach along with surrounding personnel resources, including friends and family, who have a direct influence, as well as individuals.
The results of this study showed that self-directed disease control behavior is a self-management behavior. Self-management is employed in various academic areas. The important properties of the concept commonly identified in this area are adjusting and controlling one's environment. Disease control behavior identified in the literature entails controlling daily life, such as when children with CKD adjust to their surrounding environment, such as in their school life, getting along with friends, and physical activity. By controlling their daily lives, they become com-pliant with disease treatment and actively manage their disease on their own. Repeated disease management activities that are continuously performed in daily life have therefore been established as healthy lifestyle habits [6].
These health behaviors are those that children with CKD practice as a result of their patience and efforts over a long period of time; they further apply the concept of health promotion in their lives. As such, the self-manage-ment observed among children with CKD is a process of complex interactions between the internal, environmental, and behavioral dimensions of the individual under their disease circumstances. According to Bandura's reciprocal determinism model, human behavior arises from complex interactions between the individual, environment, and behavior [30]. Therefore, self-management in children with CKD should not be viewed as a one-dimensional concept of disease management behaviors. Instead, it should be understood as a multidimensional and complex inter-action between the children's personal characteristics, environmental factors, and behaviors. Through this multidimensional approach, self-management in children with CKD can be more effectively and comprehensively realized. Ultimately, this approach plays a crucial role in helping children better manage their health and maintain a higher quality of life in their daily activities.
CONCLUSION
This study conducted a conceptual analysis of self-management in children with CKD using the Walker and Avant method [19]. The analysis revealed that self-management in children with CKD can be divided into internal, environmental, and behavioral dimensions. The internal dimension includes a positive attitude toward life and overcoming an unstable sense of self-control. The environmental dimension encompasses support from peer groups and family, whereas the behavioral dimension is characterized by the ability to control one's daily life and engage in self-directed management of CKD. Self-management in children with CKD is defined as “overcoming an unstable sense of self-control through a positive attitude toward life, receiving support from their surrounding peer groups and family, while independently controlling their daily lives and engaging in self-directed management of their CKD.”
RECOMMENDATION
The findings reveal that there is a need to develop tools to measure self-management by considering the attributes of children with CKD. Second, the identified self-manage-ment attributes should be utilized as intervention factors to develop programs aimed at enhancing the self-manage-ment capabilities of children with CKD from a nursing practice perspective.
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