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A Qualitative Study on the Impact of Covid-19 on Individuals with Autism Spectrum Disorder, Families’ Coping Strategies and Beliefs about Online Education

Year 2022, Volume: 11 Issue: 1, 1 - 16, 20.02.2022
https://doi.org/10.14686/buefad.1062733

Abstract

Most studies on individuals with ASD and their families during the pandemic were conducted via online data collection with short question-answers. For a more in-depth understanding, we have conducted a qualitative study to understand the extent of the impact of the early stage of the pandemic on children with ASD. The findings in this study were obtained from two groups of participants. The first one included 92 parents or caregivers of children with ASD from six cities in Turkey. The participants in this group reported 159 negative behavior changes in 28 different behavior types. We also selected 32 parents, some of them from the first group, to investigate their coping strategies, use of online education, and expectations from institutions and organizations. We found mixed evidence about the impact of the pandemic. Whereas most families report increased anxiety and stress, aggressive, obsessive and repetitive behavior, violence towards self and others, a significant number of families declared improvement in speech, social communication, academic skills, and eye contact. They explained that parents’ spending quality time and paying close attention to their children’s needs led to positive developments in their children. The participants also stated that online special education for children was dysfunctional and inefficient.

References

  • Akbulut, M., Şahin, U., & Esen, A. C. (2020). More than a virus: How COVID 19 infected education in Turkey? Journal of Social Science Education, 19, 30-42. https://doi.org/10.4119/jsse-3490
  • Alexander, R., Ravi, A., Barclay, H., Sawhney, I., Chester, V., Malcolm, V., Brolly, K., Mukherji, K., Zia, A., Tharian, R., Howell, A., Lane, T., Cooper, V., & Langdon, P. E. (2020). Guidance for the treatment and management of Covid-19 among people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 17(3), 256-269. https://doi.org/10.1111/jppi.12352
  • Alyoubi, R. A., & Ebtisam, A. A. (2020). Experiences of parenting child with ASD during COVID-19 pandemic: A cross-sectional study. Medical Science, 24(106), 3972-3980.
  • 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. https://doi.org/10.1007/s10803-020-04577-2
  • Barry, L., Holloway, J., & McMahon, J. (2020). A scoping review of the barriers and facilitators to implementing interventions in autism education. Research in Autism Spectrum Disorders, 78, 101617. https://doi.org/10.1016/j.rasd.2020.101617
  • Başterzi A. D, & Yılgör A. G. (2013). Kadının görünmeyen emeği: Görünmeyen emeğin görünürlüğü üzerine bir tartışma. Ş. Yüksel, L. Gülseren, & A. D. Başterzi (Eds.), Kadınların yaşamı ve kadın ruh sağlığı. Türkiye Psikiyatri Derneği Yayınları.
  • Bozkurt, A., Jung, I., Xiao, J., Vladimirschi, V., Schuwer, R., Egorov, G., Lambert, S. R., Al Freih, M., Pete, J., Olcott, Jr., D. Rodes, V., Aranciaga, I., Bali, M., Alvarez, Jr., Abel, V., Roberts, J., Pazurek, A., Raffaghelli, J. E., Panagiotou, N., de Coetlogon, P., … Paskevicius, M. (2020). A global outlook to the interruption of education due to COVID-19 pandemic: Navigating in a time of uncertainty and crisis. Asian Journal of Distance Education, 15(1), 1-126. https://doi.org/10.5281/zenodo.3878572
  • Cahapay, M. B. (2020). Rethinking education in the new normal post-COVID-19 era: A curriculum studies perspective. Academia, 4(2), ep20018. https://doi.org/10.29333/aquademia/8315
  • Cluver, L., Lachman, J. M., Sherr, L., Wessels, I., Krug, E., Rakotomalala, S., Blight, S., Hillis, S., Bachman, G., Green, G., Butchart, A., Tomlinson, M., Ward, C. L., Doubt, J., & McDonald, K. (2020). Parenting in a time of COVID-19. Lancet, 395(e64). https://doi.org/10.1016/S0140-6736(20)30736-4
  • Colizzi, M., Bortoletto, R., Silvestri, M., Mondini, F., Puttini, E., Cainelli, C., Gaudino, R., Ruggeri, M., & Zoccante, L. (2020). Medically unexplained symptoms in the times of Covid-19 pandemic: A case report. Brain, Behavior, and Immunity-Health, 5, 100073. https://doi.org/10.1016/j.bbih.2020.100073
  • Courtenay, K., & Perera, B. (2020). COVID-19 and people with intellectual disability: Impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231-236. https://doi.org/10.1017/ipm.2020.45
  • Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), 17–23. https://doi.org/10.1542/peds.2009-0958
  • Factor, R. S., Condy, E. E., Farley, J. P., & Scarpa, A. (2016). Brief report: Insistence on sameness, anxiety, and social motivation in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2548-2554. https://doi.org/10.1007/s10803-016-2781-x
  • Fiorillo, A., & Gorwood, P. (2020). The consequences of the COVID-19 pandemic on mental health and implications for clinical practice. European Psychiatry, 63(1), 1-2. https://doi.org/10.1192/j.eurpsy.2020.35
  • Huang, C., Huang, L., Wang, Y., Li, X., Ren, L., Gu, X., Kang, L., Guo, L., Liu, M., Zhou, X., Luo, J., Huang, Z., Tu, S., Zhao, Y., Chen, L., Xu, D., Li, Y., Li, C., Peng, L., Li, Y., … Cao, B. (2021). 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Lancet, 397(10270), 220–232. https://doi.org/10.1016/S0140-6736(20)32656-8
  • Hyseni Duraku, Z., & Nagavci, M. (2020). The impact of the Covid-19 pandemic on the education of children with disabilities. University of Prishtina.
  • Kalaylıoğlu, Y. (2020). Türkiye’de Covid-19 etkilerinin toplumsal cinsiyet açısından değerlendirilmesi. UN Women.
  • Khateeb, J. M., Kaczmarek, L., & Al Hadidi, M. S. (2019). Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries: A comparative review. Autism, 23(7), 1645–1654. https://doi.org/10.1177/1362361319833929
  • Lugo Marín, J., Gisbert Gustemps, L., Setien Ramos, I., Espanol Martín, G., Ibanez Jimenez, P., Forner Puntonet, M., Arteaga Henríquez, G., Soriano Día, A., Duque Yemail, J. D., & Ramos Quiroga, J. A. (2021). COVID-19 pandemic effects in people with autism spectrum disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status. Research in Autism Spectrum Disorders, 83, 101757. https://doi.org/10.1016/j.rasd.2021.101757
  • McCallion, P. (2020). Social work response needed to the challenge of COVID-19 for aging people with intellectual and developmental disabilities. Journal of Gerontological Social Work, 63(6-7), 595-597. https://doi.org/10.1080/01634372.2020.1769791
  • McConnell, D., & Savage, A. (2015). Stress and resilience among families caring for children with intellectual disability: Expanding the research agenda. Current Developmental Disorders Reports, 2(2), 100-109. https://doi.org/10.1007/s40474-015-0040-z
  • Morris, P. O., Hope, E., Foulsham, T., & Mills, J. P. (2021). Dance, rhythm, and autism spectrum disorder: An explorative study. The Arts in Psychotherapy, 73, 101755. https://doi.org/10.1016/j.aip.2020.101755
  • Nicola, M., Alsafi, Z., Sohrabi, C., Kerwan, A., Al-Jabir, A., Iosifidis, C., Agha, M., & Agha, R. (2020). The socio-economic implications of the coronavirus pandemic (COVID-19): A review. International Journal of Surgery, 78, 185-193. https://doi.org/10.1016%2Fj.ijsu.2020.04.018
  • Patton, M. (1990). Qualitative evaluation and research methods. Sage.
  • Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S. (2020). Understanding suicide risk in autistic adults: Comparing the interpersonal theory of suicide in autistic and non-autistic samples. Journal of Autism and Developmental Disorders, 50(10), 3620-3637. https://doi.org/10.1007/s10803-020-04393-8
  • Pikulski, P. J., Pella, J. E., Casline, E. P., Hale, A. E., Drake, K., & Ginsburg, G. S. (2020). School connectedness and child anxiety. Journal of Psychologists and Counsellors in Schools, 30, 13-24. https://doi.org/10.1017/jgc.2020.3
  • Rose, J., Willner, P., Cooper, V., Longdon, P. E., Murphy, G., & Stenfert Kroese, B. (2020). The effect on and experience of families with a member who has intellectual and developmental disabilities of the COVID19 pandemic in the UK: Developing an investigation. International Journal of Developmental Disabilities, Online First, 1-3. https://doi.org/10.1080/20473869.2020.1764257
  • Salman, A. U. (2020). Türkiye’de koronavirüsün eğitime etkileri: Uzaktan eğitimin ilk iki haftası nasıl geçti [The effects of coronavirus on education in Turkey: How was the first two weeks of distance education]. Eğitim Reformu Girişimi [Education Reform Initiative]. Retrieved from https://www.egitimreformugirisimi.org /turkiyede-koronavirusun-egitime-etkileri-iii-uzaktan egitimin-ilk-iki-haftasi-nasil-gecti
  • Serafini, G., Parmigiani, B., Amerio, A., Aguglia, A., Sher, L., & Amore, M. (2020). The psychological impact of COVID-19 on the mental health in the general population. QJM: An International Journal of Medicine, 113(8), 531-537. https://doi.org/10.1093/qjmed/hcaa201
  • Türkiye Büyük Millet Meclisi (2020). Down sendromu, otizm ve diğer gelişim bozukluklarının yaygınlığının tespiti ile ilgili bireylerin ve ailelerinin sorunlarının çözümü için alınması gereken tedbirlerin belirlenmesi amacıyla kurulan meclis araştırması komisyonu. Retrieved from https://acikerisim.tbmm.gov.tr/handle/11543/3136?locale-attribute=tr
  • Van Steensel, F., & Heeman, E. J. (2017). Anxiety levels in children with autism spectrum disorder: A meta-analysis. Journal of Child and Family Studies, 26(7), 1753–1767. https://doi.org/10.1007/s10826-017-0687-7

Covid-19 Salgınının Otizm Spektrum Bozukluğu Olan Bireylere Etkisi ve Ailelerinin Başetme Stratejileri İle Uzaktan Eğitime Yönelik Görüşleri Üzerine Nitel Bir Çalışma

Year 2022, Volume: 11 Issue: 1, 1 - 16, 20.02.2022
https://doi.org/10.14686/buefad.1062733

Abstract

Pandemi döneminde Otizm Spektrum Bozukluğu olan (OSB) bireyler ve aileleri üzerine yapılan çalışmaların çoğu kısa soru-cevaplarla çevrimiçi veri toplama yoluyla yapılmıştır. Bu çalışmada, pandeminin ilk döneminde OSB'li bireyler üzerindeki etkisini daha derinlemesine anlamak üzere nitel bir inceleme gerçekleştirdik. Çalışmadaki bulgular iki grup katılımcıdan elde edilmiştir. İlki, Türkiye'deki altı ilden OSB'li çocukların anne-baba veya bakıcılarından oluşan 92 katılımcıyı içermektedir. Bu gruptaki katılımcılar çocuklarının 28 farklı davranış türünde 159 olumsuz davranış değişikliği gösterdiklerini bildirdiler. Bazıları birinci gruptan olmak üzere, ikinci grupta yer alan 32 veliye daha derinlemesine görüşme sorularıyla bu süreçteki baş etme stratejileri, çevrimiçi eğitim kullanımları, kurum ve kuruluşlardan beklentilerini incledik. Katılımcılar, pandeminin etkisi ile ilgili olumlu ve olumsuz olmak üzere biribiriyle çelişik görüşler bildirmişlerdir. Çoğu aile bu süreçte çocuklarının kaygı, stres, saldırganlık, takıntılı ve tekrarlayıcı davranışlar ile kendine ve başkalarına zarar verme davranışlarında olumsuz gelişme gösterdiklerini bildirirken, önemli sayıda katılımcı çocuklarının konuşma, sosyal iletişim, akademik beceri ve göz temasında olumlu yönde gelşme olduğunu beyan etmiştir. Aileler, bu olumlu gelişmenin nedeni olarak pandemi döneminde çocuklarıyla kaliteli zaman geçirmiş olmalarına ve onların ihtiyaçlarını daha iyi gözleme fırsatı bulmalarına bağlamıştır. Katılımcıların çoğu ayrıca çevrimiçi özel eğitimin işlevsiz ve verimsiz olduğunu belirtmişlerdir.

References

  • Akbulut, M., Şahin, U., & Esen, A. C. (2020). More than a virus: How COVID 19 infected education in Turkey? Journal of Social Science Education, 19, 30-42. https://doi.org/10.4119/jsse-3490
  • Alexander, R., Ravi, A., Barclay, H., Sawhney, I., Chester, V., Malcolm, V., Brolly, K., Mukherji, K., Zia, A., Tharian, R., Howell, A., Lane, T., Cooper, V., & Langdon, P. E. (2020). Guidance for the treatment and management of Covid-19 among people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 17(3), 256-269. https://doi.org/10.1111/jppi.12352
  • Alyoubi, R. A., & Ebtisam, A. A. (2020). Experiences of parenting child with ASD during COVID-19 pandemic: A cross-sectional study. Medical Science, 24(106), 3972-3980.
  • 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. https://doi.org/10.1007/s10803-020-04577-2
  • Barry, L., Holloway, J., & McMahon, J. (2020). A scoping review of the barriers and facilitators to implementing interventions in autism education. Research in Autism Spectrum Disorders, 78, 101617. https://doi.org/10.1016/j.rasd.2020.101617
  • Başterzi A. D, & Yılgör A. G. (2013). Kadının görünmeyen emeği: Görünmeyen emeğin görünürlüğü üzerine bir tartışma. Ş. Yüksel, L. Gülseren, & A. D. Başterzi (Eds.), Kadınların yaşamı ve kadın ruh sağlığı. Türkiye Psikiyatri Derneği Yayınları.
  • Bozkurt, A., Jung, I., Xiao, J., Vladimirschi, V., Schuwer, R., Egorov, G., Lambert, S. R., Al Freih, M., Pete, J., Olcott, Jr., D. Rodes, V., Aranciaga, I., Bali, M., Alvarez, Jr., Abel, V., Roberts, J., Pazurek, A., Raffaghelli, J. E., Panagiotou, N., de Coetlogon, P., … Paskevicius, M. (2020). A global outlook to the interruption of education due to COVID-19 pandemic: Navigating in a time of uncertainty and crisis. Asian Journal of Distance Education, 15(1), 1-126. https://doi.org/10.5281/zenodo.3878572
  • Cahapay, M. B. (2020). Rethinking education in the new normal post-COVID-19 era: A curriculum studies perspective. Academia, 4(2), ep20018. https://doi.org/10.29333/aquademia/8315
  • Cluver, L., Lachman, J. M., Sherr, L., Wessels, I., Krug, E., Rakotomalala, S., Blight, S., Hillis, S., Bachman, G., Green, G., Butchart, A., Tomlinson, M., Ward, C. L., Doubt, J., & McDonald, K. (2020). Parenting in a time of COVID-19. Lancet, 395(e64). https://doi.org/10.1016/S0140-6736(20)30736-4
  • Colizzi, M., Bortoletto, R., Silvestri, M., Mondini, F., Puttini, E., Cainelli, C., Gaudino, R., Ruggeri, M., & Zoccante, L. (2020). Medically unexplained symptoms in the times of Covid-19 pandemic: A case report. Brain, Behavior, and Immunity-Health, 5, 100073. https://doi.org/10.1016/j.bbih.2020.100073
  • Courtenay, K., & Perera, B. (2020). COVID-19 and people with intellectual disability: Impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231-236. https://doi.org/10.1017/ipm.2020.45
  • Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), 17–23. https://doi.org/10.1542/peds.2009-0958
  • Factor, R. S., Condy, E. E., Farley, J. P., & Scarpa, A. (2016). Brief report: Insistence on sameness, anxiety, and social motivation in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2548-2554. https://doi.org/10.1007/s10803-016-2781-x
  • Fiorillo, A., & Gorwood, P. (2020). The consequences of the COVID-19 pandemic on mental health and implications for clinical practice. European Psychiatry, 63(1), 1-2. https://doi.org/10.1192/j.eurpsy.2020.35
  • Huang, C., Huang, L., Wang, Y., Li, X., Ren, L., Gu, X., Kang, L., Guo, L., Liu, M., Zhou, X., Luo, J., Huang, Z., Tu, S., Zhao, Y., Chen, L., Xu, D., Li, Y., Li, C., Peng, L., Li, Y., … Cao, B. (2021). 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Lancet, 397(10270), 220–232. https://doi.org/10.1016/S0140-6736(20)32656-8
  • Hyseni Duraku, Z., & Nagavci, M. (2020). The impact of the Covid-19 pandemic on the education of children with disabilities. University of Prishtina.
  • Kalaylıoğlu, Y. (2020). Türkiye’de Covid-19 etkilerinin toplumsal cinsiyet açısından değerlendirilmesi. UN Women.
  • Khateeb, J. M., Kaczmarek, L., & Al Hadidi, M. S. (2019). Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries: A comparative review. Autism, 23(7), 1645–1654. https://doi.org/10.1177/1362361319833929
  • Lugo Marín, J., Gisbert Gustemps, L., Setien Ramos, I., Espanol Martín, G., Ibanez Jimenez, P., Forner Puntonet, M., Arteaga Henríquez, G., Soriano Día, A., Duque Yemail, J. D., & Ramos Quiroga, J. A. (2021). COVID-19 pandemic effects in people with autism spectrum disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status. Research in Autism Spectrum Disorders, 83, 101757. https://doi.org/10.1016/j.rasd.2021.101757
  • McCallion, P. (2020). Social work response needed to the challenge of COVID-19 for aging people with intellectual and developmental disabilities. Journal of Gerontological Social Work, 63(6-7), 595-597. https://doi.org/10.1080/01634372.2020.1769791
  • McConnell, D., & Savage, A. (2015). Stress and resilience among families caring for children with intellectual disability: Expanding the research agenda. Current Developmental Disorders Reports, 2(2), 100-109. https://doi.org/10.1007/s40474-015-0040-z
  • Morris, P. O., Hope, E., Foulsham, T., & Mills, J. P. (2021). Dance, rhythm, and autism spectrum disorder: An explorative study. The Arts in Psychotherapy, 73, 101755. https://doi.org/10.1016/j.aip.2020.101755
  • Nicola, M., Alsafi, Z., Sohrabi, C., Kerwan, A., Al-Jabir, A., Iosifidis, C., Agha, M., & Agha, R. (2020). The socio-economic implications of the coronavirus pandemic (COVID-19): A review. International Journal of Surgery, 78, 185-193. https://doi.org/10.1016%2Fj.ijsu.2020.04.018
  • Patton, M. (1990). Qualitative evaluation and research methods. Sage.
  • Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S. (2020). Understanding suicide risk in autistic adults: Comparing the interpersonal theory of suicide in autistic and non-autistic samples. Journal of Autism and Developmental Disorders, 50(10), 3620-3637. https://doi.org/10.1007/s10803-020-04393-8
  • Pikulski, P. J., Pella, J. E., Casline, E. P., Hale, A. E., Drake, K., & Ginsburg, G. S. (2020). School connectedness and child anxiety. Journal of Psychologists and Counsellors in Schools, 30, 13-24. https://doi.org/10.1017/jgc.2020.3
  • Rose, J., Willner, P., Cooper, V., Longdon, P. E., Murphy, G., & Stenfert Kroese, B. (2020). The effect on and experience of families with a member who has intellectual and developmental disabilities of the COVID19 pandemic in the UK: Developing an investigation. International Journal of Developmental Disabilities, Online First, 1-3. https://doi.org/10.1080/20473869.2020.1764257
  • Salman, A. U. (2020). Türkiye’de koronavirüsün eğitime etkileri: Uzaktan eğitimin ilk iki haftası nasıl geçti [The effects of coronavirus on education in Turkey: How was the first two weeks of distance education]. Eğitim Reformu Girişimi [Education Reform Initiative]. Retrieved from https://www.egitimreformugirisimi.org /turkiyede-koronavirusun-egitime-etkileri-iii-uzaktan egitimin-ilk-iki-haftasi-nasil-gecti
  • Serafini, G., Parmigiani, B., Amerio, A., Aguglia, A., Sher, L., & Amore, M. (2020). The psychological impact of COVID-19 on the mental health in the general population. QJM: An International Journal of Medicine, 113(8), 531-537. https://doi.org/10.1093/qjmed/hcaa201
  • Türkiye Büyük Millet Meclisi (2020). Down sendromu, otizm ve diğer gelişim bozukluklarının yaygınlığının tespiti ile ilgili bireylerin ve ailelerinin sorunlarının çözümü için alınması gereken tedbirlerin belirlenmesi amacıyla kurulan meclis araştırması komisyonu. Retrieved from https://acikerisim.tbmm.gov.tr/handle/11543/3136?locale-attribute=tr
  • Van Steensel, F., & Heeman, E. J. (2017). Anxiety levels in children with autism spectrum disorder: A meta-analysis. Journal of Child and Family Studies, 26(7), 1753–1767. https://doi.org/10.1007/s10826-017-0687-7
There are 31 citations in total.

Details

Primary Language English
Subjects Other Fields of Education
Journal Section Articles
Authors

Birgül Koçak Oksev 0000-0002-6783-2843

Sedat Yazıcı 0000-0002-7393-0722

Mahir Uğurlu 0000-0003-4005-4882

Tülay Kaya 0000-0002-1152-2811

Ayşenur Nazik 0000-0002-8030-6071

Pınar Çelebi Demirarslan 0000-0002-0233-291X

Publication Date February 20, 2022
Published in Issue Year 2022 Volume: 11 Issue: 1

Cite

APA Koçak Oksev, B., Yazıcı, S., Uğurlu, M., Kaya, T., et al. (2022). A Qualitative Study on the Impact of Covid-19 on Individuals with Autism Spectrum Disorder, Families’ Coping Strategies and Beliefs about Online Education. Bartın University Journal of Faculty of Education, 11(1), 1-16. https://doi.org/10.14686/buefad.1062733

All the articles published in the journal are open access and distributed under the conditions of CommonsAttribution-NonCommercial 4.0 International License 

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