پژوهش های کیفی در علوم رفتاری

پژوهش های کیفی در علوم رفتاری

واکاوی تجربۀ زیستۀ والدین کودکان دارای اختلال طیف اتیسم

نوع مقاله : مقاله پژوهشی

نویسنده
سروش رنجبر
دکتری تخصصی، روان‌شناسی و آموزش کودکان استثنایی، دانشکده روان‌شناسی و علوم تربیتی، دانشگاه تهران
10.22077/qrbs.2025.10214.1122
چکیده
زمینه: اختلال طیف اتیسم، به‌عنوان یکی از اختلال‌های شایع عصبی- رشدی علاوه بر این‌که چالش‌ها، فشارها و مشکلات خاصی را برای کودکان به همراه دارد، والدین را نیز در جنبه‌های مختلف زندگی با تجربه‌های دشوار، پیامدها و تنیدگی‌های متعددی مواجه می‌سازد. درک و واکاوی تجربۀ زیستۀ والدین می‌تواند، چالش‌های مربوط به ابعاد مختلف زندگی والدین را آشکار نماید و گامی مهم در جهت کاهش مشکلات و بهبود کیفیت زندگی آن‌ها باشد.
هدف: هدف از پژوهش حاضر، شناسایی و تحلیل ابعاد مختلف تجربۀ زیستۀ والدین کودکان دارای اختلال طیف اتیسم است.
روش: روش پژوهش حاضر، کیفی از نوع پدیدارشناسی تفسیری است. مشارکت‌کنندگان با استفاده از روش نمونه‌گیری هدفمند انتخاب شدند و بر اساس ملاک‌های پژوهش با آن‌ها مصاحبه شد. با وجود اشباع نظری پس از یازدهمین مصاحبه، فرآیند جمع‌آوری داده‌ها تا مصاحبۀ شانزدهم ادامه یافت تا اعتباربخشی مطلوب حاصل شود. ابزار پژوهش عبارت بود از مصاحبۀ عمیق نیمه‌ساختاریافته. داده‌های به‌دست آمده از مصاحبه‌ها با به کارگیری راهبرد هفت مرحله‌ای Collaizi و به کمک نرم‌افزار MAXQDA تحلیل شد.
یافته‌ها: در محور شناسایی چالش‌ها، فشارها و مشکلات، چهار مضمونِ اصلی (چالش‌های عاطفی و روانی، چالش‌های ارتباطی و اجتماعی، چالش‌های اقتصادی، چالش‌های مراقبتی) و 16 مضمون فرعی و در محور ارائۀ راهکارها باهدف بهبود زندگی نیز پنج مضمونِ اصلی (حمایت‌های اجتماعی و خانوادگی، دسترسی به خدمات درمانی و آموزشی، سلامت روان، توسعۀ مهارت‌های ارتباطی والدین با کودک، سیاست‌گذاری و حمایت‌های قانونی) و 20 مضمون فرعی استخراج شد.
نتیجه‌گیری: با توجه به نتایج به‌دست آمده می‌توان نتیجه گرفت، والدین کودکان دارای اختلال طیف اتیسم با چالش‌ها و مشکلات هیجانی، روانی، ارتباطی، اجتماعی، اقتصادی و مراقبتی مواجه‌ هستند. بنابراین پیشنهاد می‌شود سیاست‌گذاران و مسئولان مرتبط، برنامه‌های حمایتی را براساس تجربه‌های زیستۀ والدین با هدف افزایش کیفیت زندگی والدین کودکان دارای اختلال طیف اتیسم طراحی و اجرا نمایند.
کلیدواژه‌ها
والدین کودکان دارای اختلال طیف اتیسم
پدیدارشناسی
کیفیت زندگی
موضوعات

عنوان مقاله English

Exploring the Lived Experience of Parents of Children with Autism Spectrum Disorder

نویسنده English

Soroush Ranjbar
PhD in Psychology and Education of Exceptional Children, Faculty of Psychology and Education, University of Tehran, Tehran, Iran
چکیده English

Background: Autism spectrum disorder, as one of the most prevalent neurodevelopmental disorders, not only imposes specific challenges, pressures, and difficulties on children but also confronts parents with numerous difficult experiences, consequences, and stressors across various aspects of life. Understanding and exploring parents' lived experience can reveal different dimensions of parents' lives and represent a step toward reducing their difficulties and improving their quality of life.
Aim: The purpose of the present study was to identify and analyze the various dimensions of the lived experience of parents of children with autism spectrum disorder
Method: The present study employed a qualitative approach based on interpretive phenomenology. Participants were selected using purposive sampling and were interviewed in accordance with the study's inclusion criteria. Although theoretical saturation was reached after the eleventh interview, data collection continued through the sixteenth interview to ensure adequate validation. The research instrument consisted of in-depth semi-structured interviews. The data obtained from the interviews were analyzed using Colaizzi's seven-step method with the assistance of MAXQDA software.
Results: In the domain of identifying challenges, pressures, and difficulties, four main themes (emotional and psychological challenges, communicative and social challenges, economic challenges, and caregiving challenges) and 16 sub-themes were extracted. In the domain of proposing solutions aimed at improving parents' lives, five main themes (social and family support, access to therapeutic and educational services, mental health, development of parent–child communication skills, and policymaking and legal support) and 20 sub-themes were identified.
Conclusions: Based on the findings, it can be concluded that parents of children with autism spectrum disorder face emotional, psychological, communicative, social, economic, and caregiving challenges and difficulties. Accordingly, it is recommended that policymakers and relevant authorities design and implement support programs grounded in parents' lived experiences, with the aim of enhancing the quality of life of parents of children with autism spectrum disorder.

کلیدواژه‌ها English

parents of children with autism spectrum disorder
phenomenology
quality of life

References

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پژوهش های کیفی در علوم رفتاری
دوره 4، شماره 2 - شماره پیاپی 8
زمستان 1404
1404
صفحه 81-100

  • تاریخ دریافت 15 مهر 1404
  • تاریخ بازنگری 05 آبان 1404
  • تاریخ پذیرش 18 آبان 1404