نوع مقاله : علمی- پژوهشی
نویسنده
گروه مطالعات زنان، دانشگاه علامه طباطبائی، تهران، ایران.
چکیده
مقدمه: از جمله بیماریهای مزمنی که به دلیل ابعاد جسمی و روانی متعدد و پایدارش، پیامدهای عمده و مداومی بر گستره وسیعی از جنبه‌های حیات فردی و اجتماعی فرد بیمار به همراه دارد، بیماری مولتیپل اسکلروزیس می‌باشد. این بیماری براساس شیوع گسترده در بین زنان و همچنین تاثیرات خاصی که بر زنان می‌گذارد، چهره‌ای زنانه دارد. با این وجود، در مطالعات داخلی، تجربه زنان مبتلا به این بیماری کمتر مورد توجه قرار گرفته است و مطالعات معدود صورت گرفته نیز غالبا مبتنی بر رویکردی بالینی-پزشکی و کمی هستند. بر همین اساس در مقاله پیش رو، تلاش می‌شود، تجربه زنان مبتلا به مولتیپل اسکلروزیس در بافت و زمینه اجتماعی جامعه ایرانی مورد مطالعه قرار گیرد.
روش: با توجه به هدف اصلی این مطالعه، رویکرد پدیدارشناختی فمینیستی در این مطالعه اتخاذ شده است. با ۲۵ زن مبتلا به این بیماری مصاحبه نیمه‌ساختاریافته صورت گرفت و مصاحبه‌ها براساس رویه پیشنهادی مستاکس، مورد تجزیه و تحلیل قرار گرفتند.
یافته‌ها: براساس روایت‌های بیان‌شده در مصاحبه‌ها، تجربه زنان مورد مطالعه از بیماری مولتیپل اسکلروزیس در قالب مضامین زندگی در تعلیق، شرم بی‌قدرتی، ناکنش‌ورزی جنسی، مخاطره مادری و دلهره همسری صورتبندی شد.
نتیجه‌گیری: با توجه به مضامین استخراج شده، تجربه زنان مشارکت‌کنندگان در تحقیق از بیماری مولتیپل اسکلروزیس ، ذیل مضمون اصلی «اضطراب هویتی» مفهوم‌پردازی شد. منظور از «اضطراب هویتی»، تجربه و احساس نگرانی ناشی از هویت جنسیتی تحقق‌نیافته توسط این زنان است.
کلیدواژه‌ها
موضوعات
عنوان مقاله [English]
The Experience of Chronic Illness in Intersection with Gender and Social Context (Study of Women's Experience of Multiple Sclerosis)
نویسنده [English]
- Ali Janadleh
Women studies, Allameh Tabataba'i, Tehran, Iran.
چکیده [English]
Objective: Multiple Sclerosis (MS) is one of the chronic illness that, due to its multiple and stable physical and mental dimensions, has major and continuous consequences on a wide range of aspects of the individual and social life of the patient. This illness has a female face based on its widespread prevalence among women and also the specific effects it has on women. Nevertheless, in domestic studies, the experience of women with this illness has been less considered, and the few studies that have been conducted are often based on a clinical-medical and quantitative approach. Accordingly, in this article, an attempt is made to study the experience of women with Multiple sclerosis in the social context of Iranian society. Method: According to the main goal of this study, a feminist phenomenological approach has been adopted. Semi-structured interview was conducted with 25 women suffering from this illness who were selected using the purposeful sampling method and Criterion sampling strategy and the interviews were analyzed based on the procedure suggested by Moustakas. Results: Based on the narratives expressed in the interviews, the studied women's experience of Multiple sclerosis illness was formulated in the themes of living in suspension, shame of powerlessness, sexual inactivity, maternity risk and spousal apprehension. "Life in suspense" means that the women participating in this study, in describing and expressing their experience of MS illness, have mentioned the sense of uncertainty and not having a clear and reliable image of the future. "Shame of powerlessness" refers to the fact that the fatigue and disability caused by MS goes beyond the physical dimension, and women with MS feel a kind of shame due to their inability to perform daily activities. "Sexual inactivity" indicates that uncertainty and disability in MS affect the patient's most private activities, especially sexual performance, in such a way that it leads to a change in the research participants' self-perception and endangering personal relationships with their wives. The forth theme is “Risky motherhood”. In such a situation, "motherhood" in women with MS becomes a "risky" issue for both the patient and the child at various fetal stages and thereafter in terms of meeting the child's care needs. Finally, the theme of "marriage anxiety" that refers to research participant concerns about the continuity of married life, worry about the husband's lack of understanding of the patient's situation and etc. Such conditions make marriage and playing the role of a wife a problematic situation for women with MS. Conclusion: According to the extracted themes, the experience of female participants in this research was conceptualized under the main theme of "identity anxiety" that refers to the experience of anxiety and worry about unfulfilled gender identity. This experience and understanding of MS, is a result of the intersection of the experience of chronic illness with gender, the body, and the social context in which a woman's identity is closely tied to pre-defined expectations and roles such as sexual attractiveness, marriage, homemaking, wifehood, motherhood, etc.
کلیدواژه‌ها [English]
- Multiple sclerosis
- lived experience
- women
- feminist phenomenology
- identity anxiety
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