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پدیدارشناسی تجربه زنانه از بیماری مزمن در زنان مبتلا به ام‌اس | ||
| مطالعات اجتماعی روان شناختی زنان | ||
| مقاله 3، دوره 21، شماره 3 - شماره پیاپی 76، مهر 1402، صفحه 58-89 اصل مقاله (1 M) | ||
| نوع مقاله: مقاله پژوهشی | ||
| شناسه دیجیتال (DOI): 10.22051/jwsps.2023.42139.2696 | ||
| نویسندگان | ||
| علی جنادله* 1؛ مریم محبی2 | ||
| 1استادیار گروه مطالعات زنان، دانشکده علوم اجتماعی، دانشگاه علامه طباطبائی، تهران، ایران. (نویسنده مسئول) ajanadleh@atu.ac.ir | ||
| 2کارشناسی ارشد مطالعات زنان، دانشکده علوم اجتماعی، دانشگاه علامه طباطبائی، تهران، ایران. mohebiv@yahoo.com | ||
| چکیده | ||
| بیماری‌های مزمن هرچند منشاء پزشکی-زیستی دارند، اما، با توجه به تأثیرات طولانی مدت آنها بر بدن و اختلالات عملکردی ناشی از این تأثیرات، ابعادی فراتر از یک پدیده زیستی پیدا کرده و جنبه‌های مختلف حیات فردی و اجتماعی فرد مبتلا و اطرافیان او را تحت تأثیر قرار می‌دهند. 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 بیمار دارد، ام‌اس است. افزایش میزان ابتلای زنان به بیماری ام‌اس در چند دهه اخیر و همچنین، افزایش نسبت ابتلا در بین زنان در مقایسه با مردان، باعث شده است که این بیماری چهره‌ای زنانه به خود بگیرد. در این مقاله از منظر جامعه‌شناسی بیماری‌های مزمن و با اتخاذ رویکرد پدیدارشناسی فمینیستی، تجربه زنان مشارکتکننده در تحقیق از بیماری ام‌اس به‌عنوان تجربه خاص زنانه که محصول تلاقی تجربه این بیماری با جنسیت، بدن و زمینه اجتماعی است، مورد توجه قرار گرفته است. تلاش شده است تا تجربه زیسته زنان از زندگی با بیماری ام‌اس و دلالت‌های معنایی این تجربه برای آنها، براساس داستان‌ها و روایت‌های خود این زنان فهم شود. براساس مصاحبه‌های صورت‌گرفته، پنج مضمون اصلی زندگی در تعلیق، شرم بی‌قدرتی، ناکنش‌ورزی جنسی، مخاطره مادری و دلهره همسری استخراج شد و با توجه به این مضامین، تجربه زنان مشارکتکننده در تحقیق از بیماری ام‌اس، ذیل فرامضمون «اضطراب هویتی» مفهوم‌پردازی شد. منظور از «اضطراب هویتی»، تجربه و احساس نگرانی ناشی از هویت جنسیتی تحقق‌نیافته توسط این زنان است. | ||
| کلیدواژه‌ها | ||
| بیماری مزمن؛ ام‌اس؛ زنان؛ تجربه زیسته؛ پدیدارشناسی فمینیستی | ||
| عنوان مقاله [English] | ||
| Phenomenology of female experience of chronic illness in women with MS | ||
| نویسندگان [English] | ||
| Ali Janadleh1؛ Maryam Mohebi2 | ||
| 1Assistant Professor in Department of Women Studies, Faculty of Social Sciences, Allameh Tabataba'i University, Tehran, Iran. ajanadleh@atu.ac.ir (Corresponding Author) | ||
| 2Master of Women Studies, Faculty of Social Sciences, Allameh Tabataba'i University, Tehran, Iran. mohebiv@yahoo.com | ||
| چکیده [English] | ||
| Although chronic illnesses have a medical-biological origin, their long-term effects on the body and the functional disorders caused by these effects have dimensions beyond a biological phenomenon. They affect various aspects of the individual's life and the social life of those around them. Multiple Sclerosis (MS) is one such chronic illness that, due to its diverse and enduring physical and mental dimensions, has significant and continuous consequences on various aspects of the patient's personal and social life. The increasing incidence of MS among women in recent decades, along with a higher incidence rate among women compared to men, has given this illness a feminine face. This article, adopting a feminist phenomenological approach within the sociology of chronic illness, considers the experience of women participating in MS research as a specific female experience resulting from the intersection of this illness with gender, body, and social context. Based on the interviews, five main themes—"living in suspense," "powerlessness," "shame," "sexual inactivity," and "the risk of maternity and spousal apprehension"—were extracted. According to these themes, the experience of women with MS is conceptualized as "Identity anxiety." "Identity anxiety" refers to the experience and feeling of worry caused by the unrealized gender identity of these women. Keywords Chronic Illness, MS, Women, Lived Experience, Feminist Phenomenology Introduction Although chronic illnesses have a medical-biological origin, their long-term effects on the body and the functional disorders caused by these effects extend beyond a biological phenomenon. They affect various aspects of the individual's life and the social life of those around them. Multiple Sclerosis (MS) is one such chronic illness that, due to its diverse and enduring physical and mental dimensions, has significant and continuous consequences on various aspects of the patient's personal and social life. The increasing incidence of MS among women in recent decades, along with a higher incidence rate among women compared to men, has given this illness a feminine face. However, the feminine face of MS is more than its statistical aspect. In addition to the problems shared with men, women with MS experience this illness differently in many ways, as it complicates their roles as mothers, wives, caregivers, and homemakers. In traditional social contexts with sharper gender role distinctions, where people are discouraged from assuming roles traditionally associated with the opposite gender, women with MS face double psychological pressure. Their inability to fulfill assigned tasks intensifies the psychological burden due to societal expectations related to femininity and gender roles. Consequently, women experience a chronic illness like MS in a unique and specific way, heavily influenced by the social context of the illness experience. Therefore, this article adopts a feminist phenomenological approach from the perspective of the sociology of chronic illness to consider the experiences of women participating in MS research as a specific female experience resulting from the intersection of gender, body, and social context. Methodology Given the emphasis on the female experience of chronic illness, particularly the intersection of gender and the experience of chronic illness in the social context, this research employs feminist phenomenology as its primary approach. To understand women's experiences of chronic MS, semi-structured interviews were conducted with 25 women suffering from this illness and members of the Kermanshah MS Association. Participants were selected based on criteria such as being at least 18 years old, having a definitive diagnosis of the illness for at least 2 years, experiencing at least one MS attack, possessing rich and useful experiences about living with this illness, and expressing a willingness to share their experiences. The interviews were analyzed based on the procedure suggested by Moustakas (1994), involving horizontalization, individual and composite textural descriptions, structured descriptions, and conceptualization of secondary themes culminating in a main theme expressing the essence of the studied experience. Findings Based on the conducted interviews, women's experience of MS illness has been conceptualized in five themes. The first theme is "Life in Suspense," highlighting the multifaceted uncertainty associated with MS that goes beyond medical-diagnostic dimensions. The second theme is "The Shame of Powerlessness," expressing the shame women feel due to their inability to perform daily tasks and the resulting fatigue. The third theme is "Sexual Inactivity," indicating how MS affects even the most private activities, especially sexual performance. The fourth theme is "Risky Motherhood," emphasizing the challenges and risks associated with motherhood for women with MS. Finally, the theme of "Marriage Anxiety" delves into the worries and apprehensions women with MS face regarding their roles as wives. Result The themes extracted from the interviews lead to the conceptualization of the experience of women with MS under the meta-theme of "Identity Anxiety." This term refers to the experience and feeling of worry caused by the unrealized gender identity of these women. The experience and perception of MS illness by the women in this research result from the intersection of the chronic illness experience with gender, body, and social context. A woman's identity is defined by societal expectations and predefined roles such as marriage, housekeeping, motherhood, etc. The choice of any alternative option for identity redefinition faces stubborn structural limitations and obstacles. | ||
| کلیدواژه‌ها [English] | ||
| Chronic illness, MS, women, lived experience, feminist phenomenology | ||
| مراجع | ||
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