واکاوی بار روانی ادراک‌شده در تجربه زیسته مادران دارای فرزند مبتلا به صرع

Extended Abstract

Introduction: Epilepsy is one of the most common neurological disorders, affecting over 70 million people worldwide and significantly impacting the physical and mental health of children (Moghaddasi et al., 2021). This chronic and debilitating condition is characterized by recurrent, unpredictable seizures, negatively affecting the quality of life of both children and their families (Lee et al., 2025). Among family members, mothers bear primary responsibility for caregiving and are subjected to severe physical, psychological, and social stressors (Sarpdaghi & Kapik, 2023). Mothers of children with epilepsy face multiple challenges, including anxiety, depression, post-traumatic stress, guilt, and social isolation. These difficulties arise from factors such as the financial burden of treatment, constant supervision, lifestyle changes, and concerns about their child's future (Atan et al., 2025). Studies indicate that poor maternal sleep quality, especially due to nocturnal seizures, significantly increases the risk of chronic fatigue and depression (Yucel et al., 2023). Research shows that 68% of children with epilepsy experience seizures at night, leading to reduced maternal sleep quality and heightened caregiving anxiety (Cook et al., 2023).

Beyond physical and psychological distress, mothers of children with epilepsy often experience social stigma. In some communities, misconceptions persist, with epilepsy being wrongly attributed to supernatural causes or contagious factors. This leads to social withdrawal and reduced social support for affected families (Wang et al., 2024; Yeni et al., 2024). The resulting social isolation and lack of understanding from society intensify maternal psychological stress, discouraging them from discussing their struggles, which further deteriorates their mental health (Jones et al., 2023). Moreover, mothers of children with treatment-resistant epilepsy (TRE) face an even greater psychological and physical burden. Forty percent of children with epilepsy do not respond to conventional treatments, necessitating rigorous management of complex therapeutic regimens. This not only reduces the child’s quality of life but also heightens maternal stress and feelings of helplessness (Metzger et al., 2024). Overall, mothers of children with epilepsy experience multifaceted challenges spanning physical, psychological, social, and economic dimensions, significantly affecting their quality of life and mental well-being. However, this aspect of epilepsy remains understudied, requiring further investigation (Jacobsen & Alqleit, 2021). Therefore, the present study aimed to address the following question: How do mothers of children with epilepsy experience their perceived psychological burden, in a way that reflects the pressures, stressors, and caregiving responsibilities from their own perspective?

Methodology: This study employed a qualitative approach using Braun and Clarke’s thematic analysis (2006, 2013), a flexible method suitable for qualitative data analysis (Narimani & Sadeghzadeh Balil, 2024; Abdali Aghagoli & Aminiha, 2022). The study population comprised mothers of children with epilepsy in Isfahan, selected through purposive sampling. A total of 14 eligible mothers participated voluntarily after providing informed consent. Inclusion criteria were a minimum secondary school education, the ability to comprehend interview content, having a child with epilepsy registered at the Isfahan Epilepsy Association, and providing care for over five years. Data were collected via semi-structured interviews, designed based on literature review and expert consultation, focusing on mothers lived experiences. Interviews lasted 45 to 90 minutes and were conducted over four months (June to September 2024). Data were analyzed using Braun and Clarke’s framework (2006, 2013).

Findings: The findings of this research include four main themes and 23 sub-themes. The themes indicate that mothers of children with epilepsy face unpleasant emotions and helplessness, concerns and worries, social stigma and shame, and caregiving burden with inadequate support, each of which negatively affects their mental health and quality of life

Theme 1: Unpleasant Emotions and Distress

Mothers of children with epilepsy experienced a range of distressing emotions. They reported depression, characterized by sadness, hopelessness, and reduced motivation. Anger arose in response to unpredictable seizures and caregiving challenges, while jealousy emerged when comparing their child to healthy peers. Continuous caregiving caused severe fatigue and emotional exhaustion, leading to physical problems such as headaches, sensory disturbances, and memory lapses. These cumulative pressures reinforced a sense of distress and helplessness, affecting both psychological and physical well-being

Theme 2: Mothers’ Concerns and Worries

Mothers of children with epilepsy faced persistent concerns that affected daily life and wellbeing. They reported anxiety about school personnel’s neglect, their child’s future ability to live independently, and frequent uncontrollable seizures. Worries included seizure-related accidents and the challenge of making the home safe. Mothers feared the child’s illness and seizure recurrence, potential neurological consequences of seizures, the burden of strict adherence to anti-seizure medication, and its side effects. Intense child dependency on the mother amplified these concerns and added continuous caregiving stress.

Theme 3: Social Stigma and Shame

Mothers of children with epilepsy experienced intense social stigma and shame. They feared others not keeping their child’s condition private, being mocked or humiliated, and the child’s illness being a source of shame. Concerns also included excessive pity from others and being blamed, reinforcing social embarrassment and reduced confidence.

Theme 4: Care Burden and Insufficient Support

Mothers of children with epilepsy faced a heavy care burden and insufficient support. They reported lack of supportive organizations, limited access to up-to-date specialists, inadequate support from spouses and relatives, and the stress of high treatment costs and financial insecurity, intensifying caregiving challenges and feelings of helplessness.

Conclusion: This study, by examining the lived experiences of mothers of children with epilepsy, revealed various challenges and needs they face. The findings show that the psychological, social, and physical impacts of epilepsy affect not only the child’s health but also the mothers' well-being. Issues such as anxiety, depression, social stigma, and caregiving pressures were identified as major concerns for mothers, highlighting the necessity for effective support and awareness-raising. This study provides a conceptual framework for a deeper understanding of the impact of epilepsy on families, offering valuable insights for policymakers and health professionals in designing targeted support and educational programs for these families. It is also recommended that future studies explore the experiences of other family members and different cultural and social contexts to enhance the breadth of the literature in this field