This study aimed to conduct a concept analysis of health-related quality of life in children with epilepsy to promote conceptual clarification and facilitate mutual understanding of the concept.
Walker and Avant's concept analysis method was adopted.
Health-related quality of life in children with epilepsy consists of six attributes: health status, inner strength, close relationships, resource-rich community, social acceptance, and changeability. According to the ecological system paradigm, these attributes are structured into five dimensions: organism, microsystem, macrosystem, exosystem, and chronosystem. These dimensions provide a comprehensive approach to the relationship between children with epilepsy and their environment. Epilepsy and interactions with multilevel ecological systems that are directly and indirectly related to children with epilepsy precede the concept, followed by positive and negative affective responses.
The findings of this study may support effective communication in various practice settings, thereby contributing to the health and well-being of children with epilepsy, as well as the development and expansion of interventions to improve their health-related quality of life.
According to the 2016 Global Burden of Disease collaboration, the disease burden of epilepsy is 13.5 million disability-adjusted life years (DALYs), accounting for more than 0.5% of the total global DALYs [
Pediatric epilepsy is a complex neurological chronic condition accompanied by physical, cognitive, psychological, behavioral, educational, and social developmental difficulties, as well as unpredictable and uncontrollable seizures [
Research in health care for patients with chronic diseases has recently focused on improving the health-related quality of life (HRQOL) during illness, moving beyond the alleviation of symptoms, as the survival rate and life expectancy of patients with chronic diseases have increased because of advances in medical technology [
HRQOL provides useful descriptive information on children's health status, facilitates the identification of children at different levels of morbidity, and enhances the understanding of the disease experience from the child's perspective [
This study is a conceptual analysis exploring the concept of HRQOL in children with epilepsy using the basic principles of conceptual analysis proposed by Walker and Avant [
Walker and Avant's [
To explore the nature of the concept, dictionaries and literature in various disciplines were investigated. Using the terms "epilepsy", "children", and "HRQOL", the literature was searched in RISS, DBpia, CINAHL, and PubMed. Studies were included if they were (1) written in Korean or English, (2) scholarly peer-reviewed, (3) available as full-text, and (4) published between 2000 and 2021. This search period was selected because HRQOL began to draw attention in 2000 as the U.S. Department of Health and Welfare included "improving quality of life" as an indicator to achieve overarching national goals in Healthy People 2000.
In total, 693 studies were identified in the search process. After eliminating duplicate studies, screening was performed by two researchers independently to control for selection bias. Studies were excluded if they (1) lacked conceptual focus or (2) were irrelevant to the research purpose. Finally, 39 studies were included in the concept analysis (
HRQOL does not appear as a term in any dictionary. Thus, the term was divided into "health" and "quality of life". According to the Standard Korean Dictionary [
According to the
Health status and quality of life, which are similar concepts to HRQOL, were analyzed to clarify this potentially ambiguous concept by examining the similarities and differences between concepts.
Health status refers to an abnormal condition considering biological dysfunctions or symptoms. It also includes an assessment of morbidity, mortality, impairment, and anthropometric measures (e.g., height, weight, and body mass index) of an individual or population [
HRQOL has been examined in various academic fields whose scope encompasses human health and well-being, such as medicine, nursing, public health, and social welfare. Furthermore, HRQOL has been expressed in many different forms because the concept is highly abstract and complex.
From the perspective of health policy, HRQOL is the health value assigned to various health conditions, and is converted into quantified values such as quality-adjusted life-years (QALYs) to evaluate the efficacy of health programs [
On the other hand, medical anthropologists who have focused on the temporal dimension of HRQOL clearly distinguished between "disease", defined as a medical diagnosis, and "illness", defined as a process that changes at different stages of the disease and different points in an individual's life. They assessed HRQOL with a focus on the experience of illness [
According to studies that attempted a context-focused approach to HRQOL, aspects of the environment including parents, families, peer groups, schools, and communities contribute to children's HRQOL and regulate the effects of disease and treatment on them [
Chon et al. [
Boling et al. [
Defining attributes are those "characteristics of concepts that appear repeatedly". The defining attributes of HRQOL in children with epilepsy that repeatedly appear in the literature are as follows: health status, inner strength, close relationships, a resource-rich community, social acceptance, and changeability.
Concept analysis is a strategy used to examine the semantic structures of concepts. In this study, the ecological paradigm was maintained for structuring the concept of HRQOL in children with epilepsy because the defining attributes enabled a broad approach to the relationship between children with epilepsy and the environment (
Health status, including clinical aspects such as the frequency or severity of seizures and number or side effects of medications, has a primary effect on HRQOL in children with epilepsy. Here, health status includes physical and mental health, as well as cognitive and behavioral functions that show problems, because diseases cause difficulties in an individual's daily life or role performance. In addition, individuals' unique inner resources such as self-esteem and self-efficacy are strongly related to HRQOL in children with epilepsy, and their presence plays an important buffer in attenuating the negative effects of factors that deteriorate HRQOL [
According to Bronfenbrenner's [
It was found that the HRQOL of children with epilepsy should be considered beyond the microsystem directly related to the child. Community resources, such as healthcare facilities for disease management, psychosocial interventions, epilepsy-related education, school personnel trained to deal with and handle seizure attacks, and facilities free of physical damage, have been used as external systems to improve HRQOL in children with epilepsy [
Cultural differences exhibit specific patterns in the level of quality of life [
HRQOL in children with epilepsy was found to be dynamically changeable depending on the configuration of perceptions of events with a significant impact on health throughout life, such as the course of illness, developmental stage, and medical events (e.g., seizures, medication changes, or surgery) [
A model case contains all the defining attributes of a concept, and it is an example that accurately represents the concept.
A was diagnosed with epilepsy at the age of 9 years and has been taking medication for 3 years. He has remained seizurefree with no medication side effects, and his cognitive and behavioral functions are also developing normally without any specific problems (health status). Although A sometimes lags in academic activities due to epilepsy, he firmly believes that he will be able to do just as well as his other friends if he takes his medications regularly and takes care of himself according to his doctor's instructions (inner strength). A's friends do not make fun of or ignore his illness, but rather visit A's house and stay with him so that A, who has limited outdoor activities, does not feel bored or lonely (close relationships).
In the early days when he was diagnosed with epilepsy, he had to take many medications every day. As a result, he always had no energy, suffered from drowsiness, and had difficulties in his daily life because of unexpected seizures. Subsequently, while on the ketogenic diet, he regained vitality and was able to return to his daily life (changeability). When A was diagnosed with epilepsy, his school conducted campaign activities in cooperation with the public health center with the goal of preventing safety accidents, supporting health care, and improving awareness of students with epilepsy. Consequently, safety devices were established after re-examining the safety management of the school facilities, and teachers gained the professional competence to efficiently respond to his seizures and perform first aid (resource-rich community). In addition, nearby residents became willing to accept their neighbor A with epilepsy and moved away from negative perceptions such as hateful looks, misunderstandings, and prejudices against epilepsy or seizures (social acceptance).
A borderline case contains some of the defining attributes, but not all of them; therefore, it cannot be regarded as representative of the concept.
B was diagnosed with epilepsy a year ago, and now her symptoms are not severe, so she is living a normal life and maintaining health and function like other people her age (health status). B considers herself valuable and precious, and she always promises that she will not give up and that she will persevere even if her epilepsy worsens and interferes with her life (inner strength). B believes that this is because she has family and friends who always support her and are present by her side as a driving force to keep a positive mindset even in an unstable future because of epilepsy (close relationships).
A related case is an example that relates to a concept but does not include the defining attributes—that is, one that superficially resembles the target concept but contains a different meaning when examined in detail.
C was diagnosed with epilepsy at the age of 5 years due to the neurological sequelae of encephalitis. C is currently homeschooled because of long-term inpatient treatment, and she is short compared to her age and has gained weight slowly. Ever since she was diagnosed with epilepsy, the whole family's attention has been focused on her, and everything revolves around her. C's mother quit her job to take care of C, and she thinks that it is her fault that C is sick, so she does everything her daughter wants.
A contrary case is described as an explicit example that is clearly unrelated to the concept.
D was diagnosed with epilepsy in the fifth grade of elementary school. She is currently on medication and is taking valproic acid and levetiracetam for treatment (absence of health status). The hospital in the area where D lives does not have a pediatric neurology center, so she has to miss school or leave early to receive medical treatment (absence of a resource-rich community). Because of this, she is often unable to attend various school activities, is often bullied because of the lack of opportunities to spend time with friends, and does not adapt well to school life (absence of close relationships). In the early stage of epilepsy, D had a seizure at the neighborhood playground. Subsequently, when she walked around the neighborhood, her neighbors consciously distanced themselves from her and feared her. In addition, her application to register at a physical education academy was rejected because she had epilepsy (absence of social acceptance). She feels useless and frustrated, thinking that her misfortune will not improve even though she is controlling her symptoms well without seizures after epilepsy surgery (absence of inner strength and changeability).
Antecedents are events or conditions that occur before a concept is created. As a result of the literature review, the antecedents of HRQOL in children with epilepsy were identified as having epilepsy and interactions with the multidimensional ecological systems that are directly or indirectly related to children with epilepsy. Along with the medical diagnosis of epilepsy, children develop a different identity—a life coexisting with epilepsy. In this long journey, dynamic interactions with the ecological systems that are directly or indirectly related to the health and life of children with epilepsy lead to the formation of perceptions about HRQOL in children with epilepsy [
In turn, the formation of perceptions of HRQOL in children with epilepsy results in positive or negative emotional experiences related to their health and lives. In other words, children with epilepsy form subjective perceptions of their health and life in their relationships with the multidimensional ecosystem. Consequently, children with epilepsy experience positive emotions such as satisfaction, happiness, hopefulness, and stability or negative emotions such as dissatisfaction, unhappiness, frustration, sadness, embarrassment, and self-pity [
Empirical referents are types or categories of actual phenomena, and their existence makes it possible to prove the occurrence of the concept. Early measurement scales developed to measure HRQOL in children with epilepsy mainly focused on problems related to the function or dysfunction of children with epilepsy from a clinician's point of view and were used to assess and evaluate changes in the application of various treatments [
• Health status: physical function, emotional well-being, cognitive-behavioral function, frequency or severity of seizures, and number or side effects of anti-epileptic drugs (AEDs)
• Inner strength: self-esteem, self-efficacy, and resilience
• Close relationships: parent-child bonding, family function, peer relationships, and school activity
• Resource-rich community: hospital, community welfare services, and school management support (teachers' competence in handling seizures, special education services, safe school environment)
• Social acceptance: social integration, stigma, secrecy or disclosure, familiarity with epilepsy, and knowledge and attitudes related to epilepsy among the public
• Changeability: the trajectory of epilepsy, developmental stage, and transition
HRQOL is a concept frequently used in the medical and healthcare fields [
The first attribute of the organism level is "health status", which is similar to three of the five major components (biological function, symptoms, and functional status) of the HRQOL model proposed by Ferrans et al. [
The second attribute of the organism level is "inner strength", which is an internal resource that enables children with epilepsy to adapt, change, and recover from adversities in life. Inner strength is difficult to realize through the cognitive approach of self-assessment alone and can be distinguished from "subjectivity", another unique attribute of individuals for which there is some consensus as an attribute of HRQOL. Similarly, inner strength was observed in the HRQOL of children with other chronic illnesses [
Among the attributes of HRQOL in children with epilepsy identified in this study, "close relationships", "resource-rich community", and "social acceptance" could be interpreted and structured at an environmental level beyond the personal level. This aligns with the viewpoint of Drotar [
As a result of identifying empirical referents for the concept of HRQOL in children with epilepsy in this study, the existing measurements partially included environmental-level attributes derived in this study but were scattered across several domains, and the boundaries of meaning were ambiguous or unclear. In addition, none included the attribute of a "resourcerich community" [
In the ecological system model, the chronosystem pursues dynamic and continuous changes through the reselection and reconstruction of children's environments and experiences [
This study is meaningful because the concept of HRQOL, which has been used without a clear meaning in the absence of a rich understanding of its comprehensiveness and implications, was identified through an analysis considering the overall context of children experiencing epilepsy, which is a unique disease process. However, although Walker and Avant's [
This study attempted to interpret the concept of HRQOL, which has been actively used in various academic fields without a sufficient understanding of the context and situation, from the perspective of children with epilepsy, using the concept analysis method of Walker and Avant [
Conceptualization: Kyung-Sook Bang; Data collection, Formal analysis: all authors; Writing-original draft: Sinyoung Choi; Writing-review and editing: all authors; Final approval of published version: all authors.
No existing or potential conflict of interest relevant to this article was reported.
This research was supported by the BK21 Four project (Center for Human-Caring Nurse Leaders for the Future) funded by the Ministry of Education (MOE, Korea) and National Research Foundation of Korea (NRF).
Please contact the corresponding author for data availability.
None.
Flow diagram for the selection of studies on health-related quality of life in children with epilepsy.
Organization of the concept of health-related quality of life in children with epilepsy. CWE, children with epilepsy.