Introduction
Childhood epilepsy is a severe and common neurological disorder with lasting complications that can affect all aspects of family life [
1]. Approximately 0.6% of children aged 1 to 17 years have active epilepsy [
2]. The prevalence of epilepsy among Iranian children varies across studies, with estimates ranging from 5 to 16.6 per 1000 people [
3]. The results of studies also show that the diagnosis of childhood epilepsy can have a negative impact on children's school attendance and education, outdoor recreation, social activities, sleep, and quality of life [
4, 5, 6]. On the other hand, children with epilepsy are more dependent on their parents' care to manage their condition due to their greater dependence on their family [
7]. Therefore, the more parents participate in care programs for children with epilepsy, the more effective the disease control and the lower the severity and complications of the disease [
8].
The results of the study by Okiah et al. [
9] show that caregivers of children with epilepsy perceive caring for a child with epilepsy as stressful, and the dimensions identified in their study included psychological, social, economic, and physical stress [
9]. Other studies have reported the problems experienced by parents of children with epilepsy, such as spending more time caring for their children at home, feeling helpless in caring for them during a seizure, experiencing psychological disturbances, emotional disturbances such as sadness, anger, depression, and anxiety, caregiving challenges such as family adjustment, physical strain, psychological stress, and time management, and financial problems such as unemployment and limited family income [
10, 11]. On the other hand, parents' care needs are influenced by many factors, and they may experience various types of internal (emotional and behavioral) and external (interpersonal, financial, housing, and educational) psychosocial problems that interfere with parents' provision of effective care [
12].
Therefore, considering the different care situations faced by parents, the care needs of parents vary from one parent to another [
13]. On the other hand, chronically ill patients are completely dependent on their caregivers, parents lack the necessary skills to provide effective and quality care, and support resources for parents are limited [
14, 15]. Therefore, understanding, recognizing, and planning for parents' care needs are among the priorities of care interventions, and the first step in meeting parents' care needs is to identify them [
16] correctly. Because an extensive search for studies did not find a clear definition of the care needs of parents with epileptic children, the present review study was conducted to identify the care needs of parents with epileptic children.
Materials and Methods
This study is a systematic review conducted to investigate the care needs of parents with epileptic children in Hamadan City, Iran, in 2023, according to the (preferred reporting items for systematic reviews and meta-analysis [PRISMA]) guidelines. PRISMA is a set of evidence-based elements for reporting in systematic reviews and meta-analyses. It can be used as a basis for reporting on systematic reviews with objectives other than evaluating interventions (such as assessing causality, prevalence, diagnosis, or prognosis) [
17].
A comprehensive search was performed in PubMed, Scopus, and Web of Science databases to select the relevant studies. The keywords used in the search included "epilepsy," "parents," "care needs," and "unmet needs." Articles published between 1975 and 2023 in Persian and English that were pertinent to the topic were considered (
Table 1).

Initially, duplicate articles were removed using EndNote software, version 18. Subsequently, the abstracts of the remaining articles were screened independently by two researchers to identify studies that met the inclusion and exclusion criteria. In the next step, the full texts of the selected articles were thoroughly reviewed, and those that fully aligned with the study's objectives were included in the final analysis.
Standard tools were employed to assess the included studies' quality and risk of bias. We used the critical appraisal skills program (CASP) checklist for qualitative studies to evaluate the methodological quality and potential biases. For quantitative studies, the strengthening the reporting of observational studies in epidemiology (STROBE) checklist was applied to assess the design and reporting quality [
18].
Two researchers (Araash Khalili and Farshid Shamsaei) conducted evaluations independently, and in case of disagreement, a third researcher (Fatemeh Cheraghi) was consulted for final decision-making. This meticulous process for selecting and assessing the risk of bias in the studies ensured the credibility and quality of the systematic review findings, guaranteeing that only high-quality studies were included in the final analysis.
Inclusion and exclusion criteria
The inclusion criteria for the study were the studies published between 1975 and 2023 in Persian and English, the full text's availability, and the presence of one or more keywords from the desired keywords in the article's title. The exclusion criterion for the study was the lack of access to the full text.
Results
A comprehensive review of articles identified 2702 articles. After removing duplicate studies, two researchers independently assessed whether there was bias in selection and whether studies lacked conceptual focus or were irrelevant to the research objective. Finally, 30 studies were included in the analysis (
Table 2).

The steps in the process are shown in
Figure 1.
Based on the results of a systematic review of studies, the care needs of parents of children with epilepsy can be grouped into five dimensions: Psychological needs, educational needs, support needs, economic and social needs, and perceived needs in caring for a child with epilepsy.
Regarding the first dimension, psychological needs, the results of the systematic review show that certain types of seizures are associated with higher levels of psychological distress. For example, complex partial seizures are associated with higher levels of psychological problems, or children taking phenobarbital have more severe psychological problems than children taking other medications [
44]. The side effects of antiepileptic drugs can also lead to psychological symptoms [
45].
Regarding educational needs, parents' need for accurate information about the cause of their children's epilepsy diagnosis, the problems they face in obtaining information about their children's condition, access to diagnostic testing, general information about epilepsy, and not knowing about their children's future condition are considered educational needs [
45-
47].
The third dimension is support needs. One of the most comprehensive areas common to all caregivers of children with epilepsy is support needs, which can be divided into seven domains: Practical, spiritual, social, psychological, informational, emotional, and physical. These dimensions help meet the patient's support needs in all areas during the illness [
31,
48].
The fourth dimension is the economic and social needs. The most important need shared by all caregivers of children with epilepsy was the financial need to cover the costs of medications, doctor visits, and hospitalizations, as well as the disruption of parental social activities due to the challenges associated with caring for a child with epilepsy [
49, 50].
Regarding the perceived needs during care, this dimension includes needs identified when caring for a child with epilepsy, such as handling seizures, medication management, seizure triggers and access to appropriate sources of information, knowledge of child nutrition and limited activity, and the need for professional life counseling [
5].
Discussion
By correctly identifying the needs of parents, caregivers can help them adapt and provide safe and quality care to children with epilepsy [
51]. The results of the present study show that the care needs of parents caring for a child with epilepsy may include psychological needs, educational needs, support needs, economic and social needs, and perceived needs while caring for a child with epilepsy. Okiah et al. [
9] labeled caregiver needs as psychological, social, economic, and physical. The results of Bruno et al.'s [
37] study indicate that the most important needs of caregivers include improving safety, clinical management, and self-management; and providing sedation. Carter et al. [
1] also described caregivers' needs as emotional, psychological, and social concerns while caring for a child.
Yu et al. [
5] described the needs of caregivers with epilepsy as information needs, unmet needs, general seizure management needs, medication management, seizure triggers, access to appropriate information sources, nutritional awareness, and urgent need for professional life counseling. Kaddumukasa et al. [
21] described the needs of caregivers with epilepsy as limited knowledge about epilepsy, lack of medication adherence, caregiving burden, lack of family support, and poor access to health care. The Jones et al. [
47] study also shows that parents often have difficulty seeing a neurologist. Parents are satisfied with the initial information they received about seizures and their treatment. The researchers pointed out that epilepsy and the resulting neurological problems can limit family activities and increase financial burden. Woodgate et al. [
42] also noted that parents of children with complex care needs did not receive the services and support they needed to help their children.
Zhang et al. [
52] described the problems of caregivers of children with epilepsy as anxiety and depression, poor sleep quality, and poor family functioning. Nevin et al. [
41] reported that parents need understandable, realistic, and targeted information. The authors suggested that unmet information needs were associated with higher stress levels, poorer psychosocial outcomes, and lower satisfaction with health care services. The results of the Hussain et al. [
49] study show that depression and anger, disrupted social life, disturbed mental health, and numerous economic problems such as medication costs, medical fees, and hospitalization costs are among caregivers of children with epilepsy. In their study, Seid et al. [
35] reported that caregiving is often a very stressful task and presents social, emotional, behavioral, and financial challenges for caregivers, making them vulnerable to mental health problems, such as depression, anxiety, and physical problems.
On the other hand, the results of the Smith et al. (2014) study show that caregivers of children with epilepsy share a common concern that they need supportive interventions to help their children live a normal life. In a study by McNELIS et al. [
26], parents report a greater need for information and support and a lower concern about unlikely events such as brain injury and death. The study's results by Wu et al. [
30] also show that parents need to know about epilepsy, continuity of care, and a support group for parents. The study's results by Lua et al. [
10] show that caregivers need more support from family members and their experts regarding physical (caregiving), psychological, and financial aspects [
10].
Conclusion
The complex psychological, educational, supportive, economic, social, and parental perceived needs of caring for a child with epilepsy can place a burden on parents. Therefore, it is necessary for systems providing services to children with epilepsy to consider the needs of their caregivers to improve caregiver skills and facilitate the caregiving process. This study may provide a context for a more detailed understanding of the needs of caregiving parents of a child with epilepsy.
Study limitations
The current limitation of this study was the lack of access to full-text copies of some of the required articles. To solve this limitation, an attempt was made to use academic institutions such as the University Central Library, which had permission to access some of the pages as much as possible.
Ethical Considerations
Compliance with ethical guidelines
This study was approved by the Ethics Committee of Hamadan University of Medical Sciences, Hamadan, Iran (Code: IR.UMSHA. REC.1402.165). The researcher made every effort to publish the results of her research, whether negative or positive, honestly, accurately, and completely, and to consider all ethical principles when conducting the study
Funding
This research was supported by Hamadan University of Medical Sciences, Hamadan, Iran.
Authors contributions
Conceptualization and writing the original draft: Arash Khalili; Methodology: Alireza Soltanian; Data collection: Arash Khalili and Afshin Fayyazi; Data analysis: Alireza Soltanian; Investigation: Fatemeh Cheraghi; Supervision, review and editing: Farshid Shamsaei and Fatemeh Cheraghi.
Conflicts of interest
The authors declared no conflict of interest.
Acknowledgments
The authors thank the Research Officer of Hamadan University of Medical Sciences, Hamadan, Iran for financial support.
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