Middle Eastern Journal of Disability Studies

fa پدیدارشناسی چالش‌های والدین دارای فرزند مبتلا به اوتیسم در دوران کرونا Phenomenological Research on the Challenges of Parents with Autistic Children During COVID-19 توانبخشی Rehabilitation مقاله پژوهشی اصیل Original Research Article چکیده زمینه و هدف: در بررسی اختلال طیف اوتیسم در دوران کرونا توجه بیشتر بر مشکلات این طیف از کودکان است؛ ولی پیامدهای این اختلال در دوران بیماری مذکور بر والدین، کمتر مدنظر قرار گرفته است. هدف از پژوهش حاضر پدیدارشناسی چالش‌های والدین دارای فرزند مبتلا به طیف اوتیسم در دوران کرونا بود. روش‌بررسی: پژوهش حاضر به‌روش کیفی و با رویکرد پدیدارشناسی اجرا شد. پژوهشگران برپایهٔ نمونه‌گیری نظری دوازده نفر از زنان دارای فرزند اوتیسم را از بهزیستی استان زنجان بین سال‌های ۱۳۹۹ و ۱۴۰۰ انتخاب کردند و با آن‌ها مصاحبه‌های عمیق و نیمه‌ساختاریافته انجام دادند. فرایند نمونه‌گیری تا رسیدن به اشباع نظری ادامه داشت. در این مسیر، جمع‌آوری داده‌ها و تحلیل آن‌ها هم‌زمان پیش رفت. در پژوهش حاضر اطلاعات به‌دست‌آمده ازطریق تحلیل مضمون، تجزیه‌وتحلیل شد. یافته‌ها: با بررسی دقیق مصاحبه‌ها، مفاهیم و مقولهٔ اصلی و درنهایت مقولهٔ مرکزی در فرایند طولانی دقیق، جزئی و مفهومی ارائه شد؛ درنتیجه این پژوهش شامل هشت مضمون اصلی مشکلات تعطیلی مدارس، مشکلات آموزشی، کیفیت ارتباط همسران با یکدیگر، ارتباط فرزند اوتیسم با فرزندان دیگر، مشکلات خاص رفتاری، سیستم حمایتی، مدیریت بحران و تأثیر بر پدر و ۴۵ مضمون فرعی و یک مقولهٔ مرکزی با مشکلات خاص رفتاری بود. نتیجه‌گیری: براساس یافته‌ها نتیجه‌گیری می‌شود، بیماری کرونا و تعطیلی مراکز نگه‌داری کودکان اوتیسم، باعث به‌وجودآمدن مشکلات عدیده‌ای در خانواده‌ها و چالش‌های زیادی برای والدین شده است؛ اگرچه برخی خانواده‌ها با راهبردهای موقتی شرایط را کمی کنترل کرده‌اند. Abstract Background & Objectives: The new coronavirus disease 2019 (COVID–19) emerged from Wuhan, China, in December 2019, infecting and killing millions of people. It is now regarded as one of the major concerns all around the world. The closure of schools due to the outbreak of coronavirus encountered children with autism and their families with serious educational problems. Having closed or part–time schools and rehabilitation centers, meeting all the physical and educational needs of children with autism was impossible. In 2014, the Centers for Disease Control and Prevention estimated the prevalence of autism to be 1 in 68. This figure has dramatically increased compared to the previous estimations in 2012, which was 1 in 88. Poor eye contact, a lack of emotions or social interactions, deficits in the use of non–verbal behaviors, and lack of age–appropriate communication are considered the manifestations of social deficits in autism. Such behaviors make parents spend more time fulfilling the needs of their children. The present study seeks to address the problems of children with autism and its impact on parents, as well as the marital challenges of these parents during the coronavirus disease, using a qualitative approach with in–depth interviews. Methods: The present research applied a qualitative approach using a phenomenological method. Using theoretical sampling, 12 women with autistic children were selected from the Welfare Organization of Zanjan Province, Iran, during 2020 and 2021. Then, they were undertaken in–depth and semi–structured interviews. The sampling process continued to achieve theoretical saturation. Simultaneously, data collection and analysis were carried out through content analysis. Since the research method was qualitative and phenomenological, the researchers used Colaizzi's 7–stage analysis method. These interviews lasted 12 days, each taking 45 minutes to 1 hour. Ethical considerations included obtaining informed consent to conduct the interview, voluntary entry and exit, keeping the names and contact numbers of the participating members confidential, confidentiality of the interviews, and obtaining permission to record the interviews. Results: By carefully examining the interviews, the main concepts and themes were presented during a long, detailed, conceptual process called "specific behavioral problems." These problems consist of 7 main themes: school closing problems (comprising subthemes of disrupting daily habits, mental turmoil, missing classmates and teachers, and worry about continuing education), educational problems (consist of subthemes of the inability to plan, attention and concentration disorders, the inability to use the training available in class groups, the lack of visual communication with the teacher, the lack of learning conditions at home due to the special conditions of the child and the mere teaching of skills self–help), the quality of spouses' relationship with each other (comprising subthemes of reduction in sexual relations, lack of understanding in educational issues, inability to solve problems, reduction of socializing, limitation of recreation and spending time, having arguments), communication of autistic children with other children (comprising subthemes of non–stop arguments, fights and beatings), support system (consist of subthemes of lack of facilities suitable for the children's conditions, lack of family support), crisis management (comprising subthemes of planning in the direction of doing work, tolerating behavior problems, using the method of encouragement, using the tools of violence, doing things the child likes, ignoring, setting time limits in using virtual space, delegating part of housework, spending time with a personal car and playing music) and the effect on the father (comprising subthemes of economic loss, lack of anger control, academic failure, increased anxiety and insomnia). Conclusion: It is concluded that COVID–19 disease and the closure of the centers for the care of autistic children caused many problems for families and parents. However, some families controlled the situation a little with temporary strategies. کرونا, اوتیسم, چالش خانواده Coronavirus, Autism, Family challenge 119 119 http://jdisabilstud.org/browse.php?a_code=A-11-223-8&slc_lang=fa&sid=1 Somayeh Shahmoradi سمیه شاهمرادی s.shaahmoradii@ut.ac.ir 100319475328460059060 100319475328460059060 No Assistant Professor, Department of Educational Psychology and Counseling, University of Tehran, Tehran, Iran استادیار گروه مشاوره، دانشکدهٔ روان‌شناسی و علوم تربیتی، دانشگاه تهران، تهران، ایران Mina Taran مینا تاران mina.taran@ut.ac.ir 100319475328460059061 100319475328460059061 No Family Counseling Group, University of Tehran, Tehran, Iran گروه مشاورهٔ خانواده، دانشگاه تهران، تهران، ایران Javad Bayat جواد بیات javad.bayat@ut.ac.ir 100319475328460059062 100319475328460059062 No Family Counseling Group, University of Tehran, Tehran, Iran گروه مشاورهٔ خانواده، دانشگاه تهران، تهران، ایران mohamad Khaledian محمد خالدیان mohamad_khaledian22@yahoo.com 100319475328460059063 100319475328460059063 Yes Psychology Group Instructor, Payam Noor University, Tehran, Iran مربی گروه روان‌شناسی دانشگاه پیام‌نور، تهران، ایران