پدیدارشناسی تجربه زنانه از بیماری مزمن در زنان مبتلا به ام اس (مقاله علمی وزارت علوم)
درجه علمی: نشریه علمی (وزارت علوم)
آرشیو
چکیده
بیماری های مزمن هرچند منشاء پزشکی-زیستی دارند، اما، با توجه به تأثیرات طولانی مدت آن ها بر بدن و اختلالات عملکردی ناشی از این تأثیرات، ابعادی فراتر از یک پدیده زیستی پیدا کرده و جنبه های مختلف حیات فردی و اجتماعی فرد مبتلا و اطرافیان او را تحت تأثیر قرار می دهند. از جمله ؛ بیماری های مزمنی که به دلیل ابعاد جسمی و روانی متعدد و پایدارش، پیامدهای عمده و مداومی بر گستره وسیعی از جنبه های حیات فردی و اجتماعی بیمار دارد، ام اس است. افزایش میزان ابتلای زنان به بیماری ام اس در چند دهه اخیر و همچنین، افزایش نسبت ابتلا در بین زنان در مقایسه با مردان، باعث شده است که این بیماری چهره ای زنانه به خود بگیرد. در این مقاله از منظر جامعه شناسی بیماری های مزمن و با اتخاذ رویکرد پدیدارشناسی فمینیستی، تجربه زنان مشارکت کننده در تحقیق از بیماری ام اس به عنوان 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 ام اس و دلالت های معنایی این تجربه برای آنها، براساس داستان ها و روایت های خود این زنان فهم شود. براساس مصاحبه های صورت گرفته، پنج مضمون اصلی زندگی در تعلیق، شرم بی قدرتی، ناکنش ورزی جنسی، مخاطره مادری و دلهره همسری استخراج شد و با توجه به این مضامین، تجربه زنان مشارکت کنند ه در تحقیق از بیماری ام اس، ذیل فرامضمون «اضطراب هویتی» مفهوم پردازی شد. منظور از «اضطراب هویتی»، تجربه و احساس نگرانی ناشی از هویت جنسیتی تحقق نیافته توسط این زنان است.Phenomenology of female experience of chronic illness in women with MS
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 IntroductionAlthough 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. MethodologyGiven 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. FindingsBased 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. ResultThe 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.
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