روانشناسی سلامت

با همکاری مشترک دانشگاه پیام نور و انجمن روانشناسی سلامت

شماره جاری

بر اساس شماره‌های نشریه

بر اساس نویسندگان

بر اساس موضوعات

نمایه نویسندگان

نمایه کلیدواژه ها

درباره نشریه

اهداف و چشم انداز

اعضای هیات تحریریه

اصول اخلاقی انتشار مقاله

بانک ها و نمایه نامه ها

پیوندهای مفید

پرسش‌های متداول

فرایند پذیرش مقالات

اطلاعات آماری نشریه

اخبار و اعلانات

تجربه بیماری مزمن در تلاقی با جنسیت و زمینه اجتماعی (مطالعه تجربه زنان از بیماری مولتیپل اسکلروزیس)

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
مراجع
Alipor, A., Rahmanian, M., & Alibakhshi, S. (2019). The Effect of Hope Therapy on Reducing Dysfunctional Attitudes of Female Patients with Multiple Sclerosis. Positive Psychology Research, 5(3), 71-82. (In Persian)
Alschuler, K. N., & Beier, M. L. (2015). Intolerance of uncertainty: shaping an agenda for research on coping with multiple sclerosis. International journal of MS care, 17(4), 153-158.
Amraei, K., Papi, F., & Tahoonei, M. (2021). Predicting the quality of life in women with Multiple Sclerosis based on coping styles, social support and sexual perversion mediated by resilience. Scientific Journal of Nursing, Midwifery and Paramedical Faculty, 7(1), 12-24. (In Persian)
Bachari, S., Mandani, G., Ghasemzadeh, R., & Shahali, S. (2021). Identifying barriers to self-advocacy in women with multiple sclerosis in Iran: A qualitative study. Archives of Rehabilitation, 22(3), 378-393. (In Persian)
Barker, A. B., Smale, K., Hunt, N., Lincoln, N. B., & Nair, R. D. (2019). Experience of identity change in people who reported a diagnosis of
multiple sclerosis: a qualitative inquiry. International journal of MS care, 21(5), 235-242.
Boeije, H. R., & Van Doorne-Huiskes, A. (2003). Fulfilling a sense of duty: how men and women giving care to spouses with multiple sclerosis interpret this role. Community, Work & Family, 6(3), 223-244.
Bury, M. (1991). The sociology of chronic illness: a review of research and prospects. Sociology of health & illness, 13(4), 451-468.
Charmaz, K. (2009). Example: The body, identity, and self: Adapting to impairment. JM Morse et al., Developing grounded theory: The second generation, 155-91.
Courts, N. F., Newton, A. N., & McNeal, L. J. (2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37(1), 20.
Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage publications.
Dennison, L., McCloy Smith, E., Bradbury, K., & Galea, I. (2016). How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PloS one, 11(7), e0158982.
Desborough, J., Brunoro, C., Parkinson, A., Chisholm, K., Elisha, M., Drew, J., ... & Phillips, C. (2020). ‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis. Health Expectations, 23(5), 1007-1027.
Esmail, S., Munro, B., & Gibson, N. (2007). Couple’s experience with multiple sclerosis in the context of their sexual relationship. Sexuality and disability, 25(4), 163-177.
Fisher, L. (2014). The illness experience: A feminist phenomenological perspective. Feminist phenomenology and medicine, 27-46.
Ghafari, S., Khoshknab, M. F., Norouzi, K., & Mohamadi, E. (2014). Spousal support as experienced by people with multiple sclerosis: a qualitative study. Journal of Neuroscience Nursing, 46(5), E15-E24.
Ghafoori, F., Dehghan-Nayeri, N., Khakbazan, Z., Hedayatnejad, M., & Nabavi, S. M. (2020). Pregnancy and Motherhood Concerns Surrounding Women with Multiple Sclerosis: A Qualitative Content Analysis. International journal of community based nursing and midwifery, 8(1), 2.
Graziano, F., Calandri, E., Borghi, M., & Bonino, S. (2020). Adjustment to multiple sclerosis and identity satisfaction among newly diagnosed women: what role does motherhood play?. Women & Health, 60(3), 271-283.
Henry, J. S. (2016). A phenomenal study of African American women with multiple sclerosis: Disability identity and the superwoman schema (Doctoral dissertation, Ohio University).
Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009). Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition. Disability and rehabilitation, 31(8), 599-606.
Käll, L. F., & Zeiler, K. (2014). Why feminist phenomenology and medicine?. Feminist phenomenology and medicine. Suny Press.
Kehoe, C. (2009). The sociology of chronic illness: an experiential account of the benefits of a sociological perspective to students of medicine. Socheolas: Limerick Student Journal of Sociology,1(1),46-54.
Kelly, M. P., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of health & illness, 18(2), 241-257.
Khftan, P., Vameghi, R., Khankeh, H. R., Fathi, M., Arshi, M., & Gholami Jam, F. (2017). Exploring therapeutic problems in women with Multiple Sclerosis: A qualitative study. Journal of Qualitative Research in Health Sciences, 6(1), 13-21. (In Persian)
Koch, T., Kralik, D., & Eastwood, S. (2002). Constructions of sexuality for women living with multiple sclerosis. Journal of Advanced Nursing, 39(2), 137-145.
Kralik, D., Koch, T., & Eastwood, S. (2003). The salience of the body: transition in sexual self‐identity for women living with multiple sclerosis. Journal of advanced nursing, 42(1), 11-20.
Lew-Starowicz, M., & Rola, R. (2013). Prevalence of sexual dysfunctions among women with multiple sclerosis. Sexuality and Disability, 31(2), 141-153.
Lohne, V., Aasgaard, T., Caspari, S., Slettebø, Å., & Nåden, D. (2010). The lonely battle for dignity: individuals struggling with multiple sclerosis. Nursing Ethics, 17(3), 301-311.
Maghsoodi, S., & Mohammadi, N. (2018). Qualitative analysis of the process of restoring social esteem by the women with multiple sclerosis. Quality & Quantity, 52(6), 2557-2575.
Mami, S., & Heidary, M. (2019). Effectiveness of intensive short-term dynamic psychotherapy on sexual function and emotional expression in women with multiple sclerosis. Health Psychology, 7(28), 131-150. (In Persian)
Manafi, S. F., & Dehshiri, G. (2017). Fear of disease progression in patients with cancer and multiple sclerosis and its relation to emotional problems. Health Psychology, 6(22), 115-130. (In Persian)
Merghati Khoei, E., Qaderi, K., Amini, L., & Haghani, H. (2012). Study on sexual behavior and quality of life of women with Multiple Sclerosis referred to Iran MS Society in Tehran in 2010. The Iranian Journal of Obstetrics, Gynecology and Infertility, 15(5), 7-14. (In Persian)
Oksala, J. (2004). What is feminist phenomenology? Radical Philosophy, 126 (July /Aug), 16-22.
Olsson, M., Lexell, J., & Söderberg, S. (2005). The meaning of fatigue for women with multiple sclerosis. Journal of advanced nursing, 49(1), 7-15.
Olsson, M., Lexell, J., & Söderberg, S. (2008). The meaning of women's experiences of living with multiple sclerosis. Health care for women international, 29(4), 416-430.
Olsson, M., Skär, L., & Söderberg, S. (2010). Meanings of feeling well for women with multiple sclerosis. Qualitative Health Research, 20(9), 1254-1261.
Parton, C., Ussher, J. M., Natoli, S., & Perz, J. (2018). Being a mother with multiple sclerosis: negotiating cultural ideals of mother and child. Feminism & Psychology, 28(2), 212-230.
Plumb-Parlevliet, A. M. (2015). The lived experience of mothering for women with multiple sclerosis.(Honours dissertation). Edith Cowan Univeristy.
Preissner, K., & Baumgartner, L. M. (2015). “I was the ‘Energizer Bunny’and now I’m the turtle’The effect of fatigue on the identity of people living with multiple sclerosis. Adult Education Research Conference.
Sarafi, H. (2016). Challenges of women with MS: They don't stop living. Bi-monthly journal of women and life, 1(2), 66-64.
Thorne, S., McCormick, J., & Carty, E. (1997). Deconstructing the gender neutrality of chronic illness and disability. Health Care for Women International, 18(1), 1-16.
Wendell, S. (2006). Toward a feminist theory of disability. The disability studies reader, 2.
Wendell, S. (2013). Unhealthy disabled: Treating chronic illnesses as disabilities. The disability studies reader, 4, 161-176.
Willson, C. L., Tetley, J., Lloyd, C., Messmer Uccelli, M., & MacKian, S. (2018). The impact of multiple sclerosis on the identity of mothers in Italy. Disability and rehabilitation, 40(12), 1456-1467.
Wilson, S. (2007). ‘When you have children, you’re obliged to live’1: motherhood, chronic illness and biographical disruption. Sociology of health & illness, 29(4), 610-626.
Yılmaz, S. D., Gumus, H., Odabas, F. O., Akkurt, H. E., & Yılmaz, H. (2017). Sexual life of women with multiple sclerosis: a qualitative study. International Journal of Sexual Health, 29(2), 147-154.
Zeiler, K., & Käll, L. F. (Eds.). (2014). Feminist phenomenology and medicine. Suny Press.
روانشناسی سلامت
دوره 13، شماره 49
خرداد 1403
صفحه 55-70
فایل ها
هم رسانی
ارجاع به این مقاله
آمار