چالش مادران فرزندان دارای اختلال طیف اتیسم در همه گیری کووید-19
محورهای موضوعی : خانواده
مریم خاک رنگین
1
,
منصور فتحی
2
,
علیه شاهرخی
3
1 - دکتری مددکاری اجتماعی، دانشگاه علوم توانبخشی و سلامت اجتماعی، تهران، ایران.
2 - دانشیار مددکاری اجتماعی، دانشکده علوم اجتماعی، دانشگاه علامه طباطبائی، تهران، ایران.
3 - کارشناسی مددکاری اجتماعی، دانشگاه علوم توانبخشی و سلامت اجتماعی، تهران، ایران.
کلید واژه: چالش ها, مادران, اتیسم, کرونا, کووید-19,
چکیده مقاله :
این پژوهش با هدف واکاوی و درک عمیق چالش ها و مشکلات مادران دارای کودک مبتلا به اتیسم در مواجهه با همه گیری کووید-19 صورت گرفته است. روش پژوهش کیفی است. با بهره گیری از روش نمونه گیری هدفمند و معیار اشباع اطلاعات، درسال 1400 با 14 مادر دارای فرزند مبتلا به اختلال طیف اتیسم در شهر تهران مصاحبه عمیق نیمه ساختارمند به عمل آمد. برای رسیدن به معیار قابلیت اعتماد پژوهش از تکنیک‌های اعتباریابی توسط مشارکت‌کنندگان، تکنیک ممیزی و حضور طولانی در میدان مطالعه و برای تحلیل داده‌ها از تحلیل مضمون بهره گرفته شد. چالش های مادران در 5 مقوله اصلی و 16 مقوله فرعی طبقه‌بندی شد، مضامین اصلی مشتمل بر چرخه ناکامی، افزایش علایم اختلال، نقش‌های افزوده و رنجش بیشتر مادر، فقدان‌های حمایت و فشار آداب کرونایی، عامل تنش و تشدید مشکلات مادر بود. نتایج این پژوهش نشان داد که ابتلای فرزند خانواده به اختلال اتیسم متضمن تحمیل هزینه‌های سنگین مالی، صرف زمان و انرژی زیاد، تحمل رفتارهای آزار دهنده کودک و جامعه و حتی دشواری در انجام امور عادی زندگی است، اما مشکلات ناشی از شیوع کرونا و لزوم رعایت دستورالعمل‌ها و محدودیتهای بهداشتی شرایط را به مراتب دشوارتر کرده است. بنابراین توجه به نیازهای خاص خانواده های دارای کودک اتیسم در سیاستگذاری ها، ارایه خدمات حمایت روانی- اجتماعی برای این گروه از خانواده ها در مواجهه با بحران ها، آموزش خانواده ها برای مدیریت برنامه روتین روزانه و فراهم آوردن دسترسی به خدمات تخصصی برای افزایش تاب آوری خانواده ها و کودکان مورد نیاز است.
This study aimed to investigate and to deeply understand challenges of mothers with autism children in the encountering of Covid-19 epidemic. The current study applies qualitative method. Purposive sampling and information saturating criteria is utilized in this study. Data were gathered on semi-structured depth interviews in 2022 year with fourteen mothers who had had an autism child in Tehran. The trustworthiness of this study was evaluated by peer reviews and group member checks. Thematic analysis was used for data analysis. Challenges of mothers were categorized in five main themes and Seventeen sub themes. Main themes include: The cycle of failure, increased symptoms of the disorder, increased roles and more resentment of the mother, lacks of support and pressure of Corona etiquette were the causes of stress and aggravation of maternal problems. This research showed that a family with child autism involves severely financial costs and they have to spend a lot of time and energy. family members suffer from annoying child behaviors and society reactions and they even have had difficulty in doing routine. In addition, Challenges related with covid-19 pandemic including Hygienic protocols and quarantine restrictions have made the situation worse than before. Therefore, seeing the special needs of families with autism children in social policy, providing services of psycho-social support for this group of families in the face of crises, raising public awareness about autism and developing social services to reduce problem is essential for promoting family resilience.
Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families? Journal of Autism and Developmental Disorders, 51(5), 1772-1780.
Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Journal of Research and practice for persons with severe disabilities, 30(4), 194-204.
Bitsika, V., & Sharpley, C. F. (2004). Stress, anxiety and depression among parents of children with autism spectrum disorder. Journal of Psychologists and Counsellors in Schools, 14(2), 151-161.
Blue-Banning, M., Summers, J. A., Frankland, H. C., Nelson, L. L., & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Journal of Exceptional children, 70(2), 167-184.
Catalano, D., Holloway, L., & Mpofu, E. (2018). Mental health interventions for parent carers of children with autistic spectrum disorder: Practice
guidelines from a critical interpretive synthesis (CIS) systematic review. International Journal of Environmental Research and Public Health, 15(2), 341.
Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and behavioral impact of COVID-19 in autism spectrum disorder: an online parent survey. Journal of Brain Sciences, 10(6), 341.
Ersoy, K., Altin, B., Sarikaya, B. B., & Özkardas, O. G. (2020). The comparison of impact of health anxiety on dispositional hope and psychological well-being of mothers who have children diagnosed with autism and mothers who have normal children, in Covid-19 pandemic. Journal of Sosyal Bilimler Araştırma Dergisi, 9(2), 117-126.
Eshraghi, A. A., Li, C., Alessandri, M., Messinger, D. S., Eshraghi, R. S., Mittal, R., & Armstrong, F. D. (2020). COVID-19: overcoming the challenges faced by individuals with autism and their families. The lancet. Psychiatry, 7(6), 481–483.
Friesen, K. A., Weiss, J. A., Howe, S. J., Kerns, C. M., & McMorris, C. A. (2022). Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study. Journal of autism and developmental disorders, 52(7), 3027–3037.
Fuld, S. (2018). Autism spectrum disorder: the impact of stressful and traumatic life events and implications for clinical practice. Clinical Social Work Journal, 46(3), 210-219.
Griffith A. K. (2022). Parental burnout and child maltreatment during the COVID-19 pandemic. Journal of family violence, 37(5), 725–731.
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of autism and developmental disorders, 43(3), 629-642.
Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic childhood events and autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(11), 3475–3486.
khougar A, Asgharnejad A A, Ranjbar H, Lotfei M, Hakimshoushtari M. (2019). Lived Experience of the Social Suffering of the Parents with Autism Spectrum Disorder (ASD). Child Journal of Social Welfare, 19 (72), 243-282.
Konstantareas, M. M., & Papageorgiou, V. (2006). Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Journal of Autism, 10(6), 593-607.
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of intellectual disability research, 50(3), 172-183.
Lee, V., Albaum, C., Tablon Modica, P., Ahmad, F., Gorter, J. W., Khanlou, N., McMorris, C., Lai, J., Harrison, C., Hedley, T., Johnston, P., Putterman, C., Spoelstra, M., & Weiss, J. A. (2021). The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review journal of the International Society for Autism Research, 14(12), 2477–2494.
Li, W., Yang, Y., Liu, Z. H., Zhao, Y. J., Zhang, Q., Zhang, L., Cheung, T., & Xiang, Y. T. (2020). Progression of Mental Health Services during the COVID-19 Outbreak in China. International journal of biological sciences, 16(10), 1732–1738.
Lovell, B., Elliot, H., Liu, C. C. S., & Wetherell, M. A. (2014). Memory failures for everyday tasks in caregivers of children with autism. Journal of Research in Developmental Disabilities, 35(11), 3057–3061.
Palmer, E. N., Pratt, K. J., & Goodway, J. (2017). A review of play therapy interventions for chronic illness: Applications to childhood obesity prevention and treatment. International Journal of Play Therapy, 26(3), 125.
Patel, J. A., Badiani, A. A., Nielsen, F. B. H., Assi, S., Unadkat, V., Patel, B., ... & Hallas, L. (2020). COVID-19 and autism: Uncertainty, distress and feeling forgotten. Journal of Public Health in Practice, 1, 100034.
Pavlopoulou, G., Wood, R., & Papadopoulos, C. (2020). Impact of Covid-19 on the experiences of parents and family carers of autistic children and young people in the UK. ID: 4992C01D-4415-480D-8088-341CF13EE1EB.
Pellicano, E., & Stears, M. (2020). The hidden inequalities of COVID-19. Journal of Autism, 24(6), 1309-1310.
Polónyiová, K., Belica, I., Celušáková, H., Janšáková, K., Kopčíková, M., Szapuová, Ž., & Ostatníková, D. (2021). Comparing the impact of the first and second wave of COVID-19 lockdown on Slovak families with typically developing children and children with autism spectrum disorder. Autism: the international Journal of Research and Practice, 25(7), 1825-2145.
Rahimi, Z G., Tabibi, Z. & Mashhadi, A. (2021). Symptoms of children with autism before and after Covid-19 disease quarantine: A comparative study. Journal of Mashhad University of Medical Sciences, 64(2), 2837-2843 (in Persian).
Ruiz-Robledillo, N., De Andrés-García, S., Pérez-Blasco, J., GonzálezBono, E., & Moya-Albiol, L. (2014). Highly resilient coping entails better perceived health, high social support and low morning cortisol levels in parents of children with autism spectrum disorder. Journal of Research in Developmental Disabilities, 35(3), 686–695.
Shahed hagh ghadam, H., Fathi Ashtiani, A., Rahnejat, A M., Ahmadi Tahour Soltani, M., Taghva, A., Ebrahimi, M R., Donyavi, V., & Jahandari, P. (2020). Psychological Consequences and Interventions during the COVID-19 Pandemic: Narrative Review. Journal of Marine Medicine, 2 (1) :1-11.
Spinelli, M., Lionetti, F., Pastore, M., & Fasolo, M. (2020). Parents' stress and children's psychological problems in families facing the COVID-19 outbreak in Italy. Journal of Frontiers in psychology, 11, 1713.
Taylor, J. L., & Warren, Z. E. (2012). Maternal depressive symptoms following autism spectrum diagnosis. Journal of Autism and Developmental Disorders, 42(7), 1411-1418.
Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Journal of Autism, 25(4), 1047-1059.
Webster, A., Feiler, A., Webster, V., & Lovell, C. (2004). Parental perspectives on early intensive intervention for children diagnosed with autistic spectrum disorder. Journal of Early Childhood Research, 2(1), 25-49.