نوع مقاله : علمی- پژوهشی

نویسندگان

• محمد هادی صافی ¹
• فاطمه عمادی ²

¹ استادیار، گروه روانشناسی، دانشکده علوم انسانی و اجتماعی، دانشگاه اردکان، اردکان، ایران.

² دانشجوی کارشناسی ارشد، رشته مشاوره توانبخشی، دانشکده علوم انسانی و اجتماعی، دانشگاه اردکان، اردکان، ایران.

چکیده

مقدمه: این پژوهش با هدف واکاوی عوامل بازدارنده پویایی زندگی از دیدگاه همسران افراد مبتلا به اختلال صرع بزرگ انجام شد. با توجه به پیامدهای گسترده صرع بر ابعاد فردی و خانوادگی و نقش حیاتی همسران به‌عنوان مراقبان غیررسمی، شناخت چالش‌های آنان ضروری است.
روش: پژوهش حاضر با رویکرد کیفی و روش کلایزی انجام گرفت؛ داده‌ها از طریق مصاحبه‌های نیمه‌ساختاریافته با ۲۲ نفر از همسران بیماران مبتلا به صرع بزرگ در شهر اصفهان و در سال 1404 جمع‌آوری و تا رسیدن به اشباع نظری تحلیل شدند.
یافته‌ها: یافته‌ها چهار مضمون اصلی را آشکار ساخت: «مراقبت توان‌کاه» (شامل کاستی‌های درمانی، بار مراقبتی شدید و افت کیفیت زندگی)، «نقایص فردی مراقب و بیمار» (از جمله خستگی روانی، ضعف آگاهی و انفعال بیمار)، «گسست اجتماعی–فامیلی» (مانند انگ اجتماعی و فقدان حمایت‌های کارآمد) و «به‌هم‌ریختگی‌های درون زندگی» (شامل مشکلات مالی، سردی روابط زناشویی و محدودیت سبک زندگی).
نتیجه‌گیری: نتایج نشان داد که چالش‌های مواجهه با صرع، زندگی همسران را در ابعاد درمانی، روانی، اجتماعی و زناشویی به‌طور چندوجهی تحت تأثیر قرار می‌دهد. این یافته‌ها اهمیت طراحی مداخلات جامع در حوزه‌های آموزشی، حمایتی و سیاست‌گذاری سلامت را برای تقویت توانمندی و رفاه همسران بیماران مبتلا به صرع برجسته می‌سازد.

کلیدواژه‌ها

• پویایی زندگی
• اختلال صرع بزرگ
• همسران
• پدیدارشناسی

موضوعات

• بیماریهای مزمن مانند سرطان،دیابت،ایدز، قلبی-عروقی ، ام اس و ....

عنوان مقاله [English]

Exploring the Inhibitory Factors of Life Dynamics from the Perspective of Spouses of Individuals with Grand Mal Epilepsy

نویسندگان [English]

• Mohammad Hadi Safi ¹
• Fateme Emadi ²

¹ assistant Professor, Department of Psychology, Faculty of Humanities and social, Ardakan University, Ardakan, Iran.

² M.Sc. student in Rehabilitation counseling, Department of counseling, Faculty of Humanities and social, Ardakan University, Ardakan, Iran.

چکیده [English]

Objective: Chronic neurological disorders, particularly epilepsy, impose substantial psychosocial burdens not only on patients but also on their families. As primary informal caregivers, spouses often experience considerable physical, psychological, and social challenges that disrupt marital relationships and family functioning. Although caregiving burden has been widely investigated, limited evidence exists regarding the lived experiences of spouses of individuals with grand mal epilepsy in relation to barriers to life dynamism, defined as an active, flexible, and fulfilling family life. Therefore, this study aimed to explore the inhibiting factors affecting life dynamism from the perspective of spouses of individuals with grand mal epilepsy. Method: This qualitative study adopted a descriptive phenomenological design using Colaizzi's seven-step method. The study population consisted of spouses of individuals with grand mal epilepsy in Isfahan, Iran, in 2025. Participants were selected through purposive sampling, and data collection continued until theoretical saturation was achieved, resulting in 22 participants recruited through the Isfahan Epilepsy Charity Society. Inclusion criteria included being 15–50 years old, having at least three years of marriage, having a spouse diagnosed with grand mal epilepsy for at least three years, and providing informed consent. Data were collected through semi-structured, in-depth interviews exploring participants' experiences of life dynamism and its barriers. Interviews were audio-recorded, transcribed verbatim, and analyzed using Colaizzi's seven-step phenomenological approach. Trustworthiness was established based on Lincoln and Guba's criteria, including credibility, dependability, transferability, and confirmability, through prolonged engagement, member checking, and peer review. Results:  Analysis of the interviews identified a multidimensional network of barriers to life dynamism.Participants described life with an affected spouse as an exhausting and persistent cycle of caregiving. Continuous vigilance, fear of seizure recurrence, inadequate rehabilitation services, and heavy caregiving responsibilities resulted in emotional exhaustion and diminished quality of life. As one participant stated, “I feel the entire responsibility of another person's life is on my shoulders.” Caregivers also reported burnout, guilt, poor physical and mental health, and neglect of self-care. Simultaneously, many patients became passive, lost self-confidence, and withdrew from treatment participation and daily activities. Insufficient knowledge regarding epilepsy management among both patients and caregivers further intensified these challenges. A lack of social and institutional support emerged as another significant barrier. Participants described feelings of loneliness, limited assistance from relatives and healthcare services, and stigma associated with epilepsy, which often resulted in secrecy and withdrawal from social interactions because of fear of judgment. Financial and occupational difficulties further reduced family dynamism. High treatment expenses, reduced employment opportunities, and economic insecurity increased stress within families. Marital relationships were negatively affected by emotional distancing, reduced communication, sexual difficulties, and increased conflict. Lifestyle restrictions, including limitations on travel, recreation, and daily planning because of the unpredictability of seizures, contributed to a rigid and stressful family environment. Conclusion: This phenomenological study demonstrated that barriers to life dynamism among spouses of individuals with grand mal epilepsy are multidimensional and interconnected. Exhausting caregiving.demands, caregiver and patient deficits, socio-familial disconnection, and intra-life disruptions collectively undermine quality of life, marital satisfaction, and family functioning. These findings indicate that the consequences of epilepsy extend beyond clinical manifestations to psychological, social, and economic dimensions. The results highlight the need for comprehensive family-centered interventions, including caregiver education, stress-management and self-care training, psychological counseling, peer-support programs, stigma-reduction initiatives, and financial assistance. Strengthening formal support systems may substantially improve caregivers' well-being and family functioning. Future studies should evaluate the effectiveness of such interventions using longitudinal and experimental designs.

کلیدواژه‌ها [English]

• Life Dynamism
• Grand Mal Epilepsy
• Spouses
• Phenomenology