Evaluation of Parents' Awareness of Childhood Autism and the Problems They Experience During the Educational Process: A Qualitative Study
Yıl 2024,
Cilt: 6 Sayı: 1, 1 - 21, 14.08.2024
Fatma Burcu Doğanç
Selma Hasanoglu
Harika Özaslan
İlayda Mahsereci
Elif Simay Binici
Cemre Hamoğlu
Abobakr Bagaber
Şevket Girgin
Seyhan Hıdıroğlu
Öz
This study aimed to assess parental awareness of childhood autism and examine the impact of a parent training program using a qualitative research methods. Semi-structured interviews were conducted with four sets of parents and one mother, all with children diagnosed with autism between 36-40 months and receiving special education at a kindergarten in Istanbul. Data from the interviews were subjected to content analysis. The findings revealed a general lack of prior knowledge among participants regarding autism. Nevertheless, they reported substantial benefits derived from the parental training sessions conducted using the membrane/shell model, an innovative educational paradigm. Participants noted that the training sessions facilitated their recognition and mitigation of behavioral challenges with their children. Moreover, all participants underscored the critical importance of early education, particularly post-autism diagnosis, and emphasized the active involvement of parents in the educational process. Given these outcomes, it is recommended to organize parent training programs that permit the participation of both parents and integrate the membrane/shell education model. Such initiatives can augment individualized education efforts for young children with autism, thereby enhancing outcomes for affected children and families.
Kaynakça
- Aguiar, M. C. M. D., & Pondé, M. P. (2020). Autism: impact of the diagnosis in the parents. Jornal Brasileiro de Psiquiatria, 69, 149-155. https://doi.org/10.1590/0047-2085000000276
- Aktaş, B. (2015). Aile eğitiminin otizmli çocuğa sahip ailelerin milieu öğretim tekniklerinden tepki isteme-model olmayı kullanmalarındaki etkililiği [Yayınlanmamış yüksek lisans tezi]. Abant İzzet Baysal Üniversitesi.
- Alshaigi, K., Albraheem, R., Alsaleem, K., Zakaria, M., Jobeir, A., & Aldhalaan, H. (2020). Stigmatization among parents of autism spectrum disorder children in Riyadh, Saudi Arabia. International Journal of Pediatrics and Adolescent Medicine, 7(3), 140-146. https://doi.org/10.1016/j.ijpam.2019.06.003
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
- Aslan, K., & Şahin, S. (2015). Current studies conducted In Turkey towards improving the social abilities in children diagnosed with autism spectrum disorder. Hacettepe University Faculty of Health Sciences Journal, 2(3), 1-18.
- Ateş, S., & Rakap, S. (2021). Otizm Spektrum Bozukluğuna Sahip Çocukları Olan Annelerinin Okulöncesi Eğitim Hizmetleri Sürecine İlişkin Deneyimlerinin İncelenmesi. Turkish Journal of Special Education Research and Practice, 3(1), 23-46. https://doi.org/10.37233/TRSPED.2021.0111
- Ayakaka, G. (2021). Healthcare professionals' knowledge about autism spectrum disorder in children: A systematic literature review. [Unpublished master thesis]. Jönköping University.
- Bilgin, H. & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish Mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92-98. https://doi.org/10.1111/j.1744-6171.2010.00228.x
- Celia, T., Freysteinson, W., Fredland, N., & Bowyer, P. (2020). Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns. Journal of Advanced Nursing, 76(1), 221-233. https://doi.org/10.1111/jan.14213
- Centers for Disease Control Prevention (2022). Autism spectrum disorder: Data & statistics on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/data.html.
- Chansa-Kabali, T., Nyoni, J., & Mwanza, H. (2019). Awareness and knowledge associated with autism spectrum disorders among university students in Zambia. Journal of Autism and Developmental Disorders, 49, 3571-3581. https://doi.org/10.1007/s10803-019-04044-7
- Corsello, C. (2005). Early Intervention in Autism. Infants & Young Children, 18, 74-85. https://doi.org/10.1097/00001163-200504000-00002
- Çetin, Ş. E., Akkanat, R., Sarısaltık, A., Hıdıroğlu, S., Lüleci, N. E., Karavuş, A., & Karavuş, M. (2020). A qualitative study inquiring perceived stigma of parents having children with autism attending a rehabilitation center in İstanbul, Turkey. Nobel Medicus Journal, 16(1), 12-20.
- Dertli, S., & Başdaş, Ö. (2022). In the adaptation process of parents with a child diagnosed with autism using the human-to-human relationship model. Arşiv Kaynak Tarama Dergisi, 31(3), 237-242. https://doi.org/10.17827/aktd.1078456
- Divan, G., Vajaratkar, V., Desai, M. U., Strik‐Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190-200. https://doi.org/10.1002/aur.1225
- Estes, A., Swain, D. M., & MacDuffie, K. E. (2019). The effects of early autism intervention on parents and family adaptive functioning. Pediatric, 2. https://doi.org/10.21037/pm.2019.05.05
- Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2020). Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism, 24(2), 470-483. https://doi.org/10.1177/1362361319874647
- Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Rural and Remote Health, 16(2), 3517.
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- Hasanoğlu, S. (2018). Zar hipotezi: “Her şey bir kabuk içerisindedir”. Hasan Kalyoncu Üniversitesi Psikoloji Araştırmaları Dergisi, Sayı 6, 44-46.
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- Koyama, T., Tachimori, H., Sawamura, K., Koyama, A., Naganuma, Y., Makino, H., & Takeshima, T. (2009). Mental health literacy of autism spectrum disorders in the Japanese general population. Social Psychiatry and Psychiatric Epidemiology, 44, 651-657. https://doi.org/10.1007/s00127-008-0485-z
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- Morsa, M., De Andrade, V., Alcaraz, C., De La Tribonnière, X., Rattaz, C., & Baghdadli, A. (2022). A scoping review of education and training interventions in Autism Spectrum Disorder. Patient Education and Counseling, 105(9), 2850-2859.
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Ebeveynlerde Çocukluk Çağı Otizmi Farkındalığının ve Eğitim Süreçlerinde Yaşadıkları Sorunların Değerlendirilmesi: Niteliksel Bir Araştırma
Yıl 2024,
Cilt: 6 Sayı: 1, 1 - 21, 14.08.2024
Fatma Burcu Doğanç
Selma Hasanoglu
Harika Özaslan
İlayda Mahsereci
Elif Simay Binici
Cemre Hamoğlu
Abobakr Bagaber
Şevket Girgin
Seyhan Hıdıroğlu
Öz
Bu çalışmada ebeveynlerde çocukluk çağı otizmi farkındalığının değerlendirilmesi ve bir proje kapsamında uygulanan ebeveyn eğitiminin niteliksel olarak incelenmesi amaçlanmıştır. Nitel bir araştırma olarak tasarlanan çalışma için İstanbul’da bir anaokulunda özel eğitim almakta olan 36-40 ay arası otizm tanılı çocuğu olan 4 ebeveyn çifti ve 1 anne ile yarı-yapılandırılmış görüşmeler gerçekleştirilmiştir. Görüşme verileri içerik analizi yoluyla analiz edilmiştir. Bulgular, katılımcıların çoğunun daha önce otizm hakkında herhangi bir şey bilmedikleri ortaya çıkarmıştır. Katılımcılar yeni bir eğitim modeli olarak tasarlanan zar/kabuk modeli ile aldıkları ebeveyn eğitimlerinden çok yararlandıklarını ve bu eğitim sayesinde çocuklarına karşı yaptıkları hatalı davranışları gördüklerini belirtmişlerdir. Tüm katılımcılar özellikle tanı konur konmaz, küçük yaşlarda verilen eğitimlerin ve ebeveynlerin eğitim süreçlerine aktif olarak katılmalarının çok önemli olduğunu vurgulamıştır. Özellikle küçük yaştaki OSB’li çocukların bireysel eğitimlerinin yanı sıra her iki ebeveynin de katılabileceği zar/kabuk eğitim modelinin uygulanabildiği ebeveyn eğitim programlarının düzenlenmesi önerilmektedir.
Etik Beyan
Araştırma için Marmara Üniversitesi Tıp Fakültesi Klinik Araştırmalar Etik Kurulu’ndan 06.05.2022 tarih ve 09.2022.745 sayılı etik kurul onayı alınmıştır.
Destekleyen Kurum
Projedeki çocuk ve ebeveyn eğitimleri “Ahbap Derneği – Can Ahbap Okul Öncesi Otizm Entegrasyon Projesi” kapsamında çocuklara ve ebeveynlere ücretsiz olarak verilmiştir. Araştırmacılara herhangi bir finansal destek sağlanmamıştır.
Teşekkür
Ahbap Derneği’ne teşekkür ederiz.
Kaynakça
- Aguiar, M. C. M. D., & Pondé, M. P. (2020). Autism: impact of the diagnosis in the parents. Jornal Brasileiro de Psiquiatria, 69, 149-155. https://doi.org/10.1590/0047-2085000000276
- Aktaş, B. (2015). Aile eğitiminin otizmli çocuğa sahip ailelerin milieu öğretim tekniklerinden tepki isteme-model olmayı kullanmalarındaki etkililiği [Yayınlanmamış yüksek lisans tezi]. Abant İzzet Baysal Üniversitesi.
- Alshaigi, K., Albraheem, R., Alsaleem, K., Zakaria, M., Jobeir, A., & Aldhalaan, H. (2020). Stigmatization among parents of autism spectrum disorder children in Riyadh, Saudi Arabia. International Journal of Pediatrics and Adolescent Medicine, 7(3), 140-146. https://doi.org/10.1016/j.ijpam.2019.06.003
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
- Aslan, K., & Şahin, S. (2015). Current studies conducted In Turkey towards improving the social abilities in children diagnosed with autism spectrum disorder. Hacettepe University Faculty of Health Sciences Journal, 2(3), 1-18.
- Ateş, S., & Rakap, S. (2021). Otizm Spektrum Bozukluğuna Sahip Çocukları Olan Annelerinin Okulöncesi Eğitim Hizmetleri Sürecine İlişkin Deneyimlerinin İncelenmesi. Turkish Journal of Special Education Research and Practice, 3(1), 23-46. https://doi.org/10.37233/TRSPED.2021.0111
- Ayakaka, G. (2021). Healthcare professionals' knowledge about autism spectrum disorder in children: A systematic literature review. [Unpublished master thesis]. Jönköping University.
- Bilgin, H. & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish Mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92-98. https://doi.org/10.1111/j.1744-6171.2010.00228.x
- Celia, T., Freysteinson, W., Fredland, N., & Bowyer, P. (2020). Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns. Journal of Advanced Nursing, 76(1), 221-233. https://doi.org/10.1111/jan.14213
- Centers for Disease Control Prevention (2022). Autism spectrum disorder: Data & statistics on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/data.html.
- Chansa-Kabali, T., Nyoni, J., & Mwanza, H. (2019). Awareness and knowledge associated with autism spectrum disorders among university students in Zambia. Journal of Autism and Developmental Disorders, 49, 3571-3581. https://doi.org/10.1007/s10803-019-04044-7
- Corsello, C. (2005). Early Intervention in Autism. Infants & Young Children, 18, 74-85. https://doi.org/10.1097/00001163-200504000-00002
- Çetin, Ş. E., Akkanat, R., Sarısaltık, A., Hıdıroğlu, S., Lüleci, N. E., Karavuş, A., & Karavuş, M. (2020). A qualitative study inquiring perceived stigma of parents having children with autism attending a rehabilitation center in İstanbul, Turkey. Nobel Medicus Journal, 16(1), 12-20.
- Dertli, S., & Başdaş, Ö. (2022). In the adaptation process of parents with a child diagnosed with autism using the human-to-human relationship model. Arşiv Kaynak Tarama Dergisi, 31(3), 237-242. https://doi.org/10.17827/aktd.1078456
- Divan, G., Vajaratkar, V., Desai, M. U., Strik‐Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190-200. https://doi.org/10.1002/aur.1225
- Estes, A., Swain, D. M., & MacDuffie, K. E. (2019). The effects of early autism intervention on parents and family adaptive functioning. Pediatric, 2. https://doi.org/10.21037/pm.2019.05.05
- Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2020). Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism, 24(2), 470-483. https://doi.org/10.1177/1362361319874647
- Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Rural and Remote Health, 16(2), 3517.
- Güleç-Aslan, Y., Cihan, H., & Altın, D. (2014). Living with a child with autism spectrum disorders: Experiences of mothers. Elektronik Sosyal Bilimler Dergisi, 13(50), 96-111. https://doi.org/10.17755/esosder.41128
- Hasanoğlu, S. (2018). Zar hipotezi: “Her şey bir kabuk içerisindedir”. Hasan Kalyoncu Üniversitesi Psikoloji Araştırmaları Dergisi, Sayı 6, 44-46.
- İgalçi, E. E. Ç. (2021). Erken Çocukluk döneminde sosyal bilişsel öğrenme kuramından hareketle değerler eğitiminde tasavvufî unsurlar. Balıkesir İlahiyat Dergisi, 14, 61-90.
- Kizir, M. (2021). Distance parenting education applications in the instruction of communication skills to individuals with autism spectrum disorder. Ankara University Faculty of Educational Sciences Journal of Special Education, 22(1), 253-281. https://doi.org/10.21565/ozelegitimdergisi.554714
- Koyama, T., Tachimori, H., Sawamura, K., Koyama, A., Naganuma, Y., Makino, H., & Takeshima, T. (2009). Mental health literacy of autism spectrum disorders in the Japanese general population. Social Psychiatry and Psychiatric Epidemiology, 44, 651-657. https://doi.org/10.1007/s00127-008-0485-z
- Koyuncu, M., & Akman, B. (2018). Erken çocukluk döneminde düşünme becerilerinin gelişimi. Milli Eğitim Dergisi, 47(218), 5–20.
- Kurşun, Z. (2023). Özel gereksinimli bireylerde sosyal beceri öğretimine ilişkin ülkemizde yapılan tezlerin incelenmesi. Journal of Sustainable Education Studies, 4(1), 27-40.
- Mansur, M., Masyasari, R., Awad, F. B., & Asriyanti, A. (2022). Self acceptance in parents of children with autism. KnE Social Sciences, 453-461.
- Miovska-Spaseva, S. (2016). The educational theory of John Dewey and its ınfluence on educational policy and practice in Macedonia. Espacio, Tiempo y Educación, 3(2), 207-224. https://doi.org/10.14516/ete.2016.003.002.009
- Mirabile, S. P. (2014). Parents’ inconsistent emotion socialization and children’s socioemotional adjustment. Journal of Applied Developmental Psychology, 35(5), 392–400. https://doi.org/10.1016/j.appdev.2014.06.003
- Morsa, M., De Andrade, V., Alcaraz, C., De La Tribonnière, X., Rattaz, C., & Baghdadli, A. (2022). A scoping review of education and training interventions in Autism Spectrum Disorder. Patient Education and Counseling, 105(9), 2850-2859.
- Mukaddes, N. M., Tutkunkardas, M. D., Sari, O., Aydin, A., & Kozanoglu, P. (2014). Characteristics of children who lost the diagnosis of autism: A sample from Istanbul, Turkey. Autism Research And Treatment, 472120. https://doi.org/10.1155/2014/472120
- Orum-Çattık, E., Yetkin, A. İ., & Diken, İ. H. (2019). Parent-implemented interventions in autism spectrum disorder in early childhood. Ankara University Faculty of Educational Sciences Journal of Special Education, 21(3), 589-610. https://doi.org/10.21565/ozelegitimdergisi.543446
- Özer, İ. Ö. (2013). Piaget'nin bilişsel gelişim kuramı ve bir roman kahramanı: Zeze.1. 1–11. https://scholar.google.com/citations?user=c0oemQEAAAAJ&hl=tr
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