Middle Eastern Journal of Disability Studies

fa پدیدارشناسی تجربهٔ زیستهٔ بیماران مولتیپل‌اسکلروزیس از فضای معماری محیط بیمارستان رازی شهر تبریز Phenomenology of the Lived Experience of Multiple Sclerosis Patients in the Architectural Space of Razi Hospital in Tabriz City, Iran معماری و شهرسازی Architecture مقاله پژوهشی اصیل Original Research Article چکیده زمینه و هدف: بیماری مولتیپل‌اسکلروزیس (ام‌اس) به‌عنوان یک اختلال عصبی مزمن، چالش‌های متعددی را برای بیماران ایجاد می‌کند و طراحی محیط‌های درمانی می‌تواند بر سلامت جسمی و روانی و اجتماعی آنان تأثیر بگذارد. این پژوهش باهدف بررسی تجربهٔ زیستهٔ بیماران ام‌اس از فضای معماری بیمارستان رازی شهر تبریز انجام شد. روش‌بررسی: پژوهش حاضر با رویکرد کیفی و روش پدیدارشناسی تفسیری بود. داده‌ها ازطریق مصاحبه‌های عمیق نیمه‌ساختاریافته با بیست بیمار ام‌اس (دوازده زن و هشت مرد با میانگین سنی ۳۰٫۷ سال) جمع‌آوری شد. تحلیل داده‌ها با روش تحلیل مضمون براون و کلارک (۲۰۰۶) انجام گرفت. نمونه‌گیری به‌صورت هدفمند و تا رسیدن به اشباع نظری ادامه یافت. یافته‌ها: پنج مضمون اصلی و پانزده مضمون فرعی از داده‌ها استخراج شد: ۱. محیط استرس‌زا دارای مؤلفه‌های آلودگی‌های محیطی، فقدان آرامش، ترس و ناامنی؛ ۲. فضای غیرخودی با فقدان حریم خصوصی، احساس بیگانگی، تجربهٔ تبعیض؛ ۳. محیط غیردرمانگر با فقدان عناصر طبیعی، دسترسی‌ناپذیری، فضای افسرده‌کننده؛ ۴. نیازهای برآورده‌نشده شامل نیاز به آرامش، نیاز به فضای اجتماعی، نیاز به استقلال؛ ۵. آرزوهای معمارانه با محوریت طبیعت‌محوری، انسان‌محوری، جامعه‌محوری. نتیجه‌گیری: براساس یافته‌های پژوهش، فضای معماری بیمارستان رازی به‌عنوان محیطی استرس‌زا و غیرحمایتی تجربه می‌شود که پاسخ‌گوی نیازهای بیماران ام‌اس نیست. بازنگری در طراحی محیط‌های درمانی با تأکید بر رویکردهای کاربرمحور و طبیعت‌محور برای بهبود کیفیت زندگی این بیماران ضروری است. Abstract Background & Objectives: Multiple sclerosis (MS), a chronic neurological disorder, imposes significant physical, psychological, and social challenges on patients. Architecture can profoundly influence patients' emotional responses, sense of control, and overall experience during treatment and hospitalization. Ambient lighting and natural landscapes positively affect patient morale and recovery. In particular, the layout and design of healthcare facilities may reduce or exacerbate the feelings of confinement and helplessness that patients experience, affecting their mental and physical well–being. The lived experience of patients with MS in healthcare settings is not only limited to physical dimensions but also includes psychological and social dimensions. The need to design spaces to support people with mobility impairments cannot be ignored. As patients with MS often face challenges such as mobility limitations and fatigue, accessible architecture is essential not only for comfort but also as a factor affecting quality of life. This study explores the lived experiences of patients with MS in the architectural environment of Razi Hospital, a specialized healthcare setting in Tabriz City, Iran. Methods: A qualitative interpretive phenomenological approach was adopted. The study population consisted of all patients with MS living in Tabriz who had been hospitalized or treated at Razi Hospital. Purposive sampling was performed using the snowball technique. The inclusion criteria for participants in the study were as follows: a definitive diagnosis of multiple sclerosis by a neurologist, having at least one hospitalization or referral to Razi Hospital in Tabriz in the last three years, the ability to express one's experiences, willingness to participate in the study, aged over 18 years. Interviews continued until theoretical saturation was reached. According to Table 1, 20 patients (12 women and 8 men) with an average age of 30.7 years (age range 20–53 years) were interviewed. The disease duration in the participants ranged from 1 to 13 years. Regarding marital status, 13 were single, and 7 were married. The participants had diverse occupations and education, including students, teachers, homemakers, artists, taxi drivers, and employees. Data were collected through in–depth semi–structured interviews. Interviews were conducted between May and October 2021. Due to the COVID–19 pandemic and in–person restrictions, most interviews were conducted by telephone or video call. When possible, in-person interviews were conducted in a quiet, private location agreed upon by the participant (usually the participant's home or the researcher's workplace). Data analysis was conducted using the 6-step thematic analysis method (Braun & Clarke, 2006). To facilitate the data analysis process, MAXQDA software version 2020 was used. Results: Five main themes and 15 subthemes were extracted from the data: 1) stressful environment with components of environmental pollution, lack of peace, fear, and insecurity; 2) alien space with lack of privacy, feeling of alienation, and experience of discrimination; 3) non-therapeutic environment with lack of natural elements, inaccessibility, and depressive space; 4) unmet needs including the need for peace, the need for social space, and the need for independence; 5) architectural aspirations with a focus on nature-centeredness, human-centeredness, and community-centeredness. Conclusion: Based on the research findings, the architectural space of Razi Hospital is experienced as a stressful and unsupportive environment that does not meet the needs of MS patients. Reconsidering the design of treatment environments with an emphasis on user-centered and nature-centered approaches is necessary to improve the quality of life of these patients. مولتیپل‌اسکلروزیس, تجربهٔ زیسته, معماری درمانی, بیمارستان رازی, طراحی کاربرمحور Multiple sclerosis, Lived experience, Therapeutic architecture, User-centered design, Hospital environment 30 30 http://jdisabilstud.org/browse.php?a_code=A-12-3951-1&slc_lang=fa&sid=1 Hadi Adineh Ghahremani هادی آدینه قهرمانی hadi.a.gahramani@gmail.com 100319475328460066200 100319475328460066200 No Department of architecture, Ta.C., Islamic Azad University, Tabriz, Iran دانشجوی دکتری تخصصی گروه معماری، واحد تبریز، دانشگاه آزاد اسلامی، تبریز، ایران Shabnam Akbari Namdar شبنم اکبری نامدار Namdar@iau.ac.ir 100319475328460066201 100319475328460066201 Yes Department of architecture, Ta.C., Islamic Azad University, Tabriz, Iran استادیار گروه معماری، واحد تبریز، دانشگاه آزاد اسلامی، تبریز، ایران Hassan Sattari Sarbangholi حسن ستاری ساربانقلی Sattari@iau.ac.ir 100319475328460066202 100319475328460066202 No Department of architecture and Urban Planning, Ta.C., Islamic Azad University, Tabriz, Iran دانشیار گروه معماری و شهرسازی، واحد تبریز، دانشگاه آزاد اسلامی، تبریز، ایران