TY  - JOUR
T1  - Ebeveynlerde Çocukluk Çağı Otizmi Farkındalığının ve Eğitim Süreçlerinde Yaşadıkları Sorunların Değerlendirilmesi: Niteliksel Bir Araştırma
TT  - Evaluation of Parents' Awareness of Childhood Autism and the Problems They Experience During the Educational Process: A Qualitative Study
AU  - Doğanç, Fatma Burcu
AU  - Hasanoglu, Selma
AU  - Özaslan, Harika
AU  - Mahsereci, İlayda
AU  - Binici, Elif Simay
AU  - Hamoğlu, Cemre
AU  - Bagaber, Abobakr
AU  - Girgin, Şevket
AU  - Hıdıroğlu, Seyhan
PY  - 2024
DA  - August
Y2  - 2024
DO  - 10.37233/TRSPED.2024.0144
JF  - Turkish Journal of Special Education Research and Practice
JO  - TRSPED
PB  - Salih RAKAP
WT  - DergiPark
SN  - 2687-6213
SP  - 1
EP  - 21
VL  - 6
IS  - 1
LA  - tr
AB  - 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.
KW  - ebeveyn eğitimi
KW  - otizm
KW  - özel eğitim
KW  - farkındalık
N2  - 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.
CR  - 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
CR  - 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.
CR  - 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
CR  - American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
CR  - 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.
CR  - 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
CR  - Ayakaka, G. (2021). Healthcare professionals' knowledge about autism spectrum disorder in children: A systematic literature review. [Unpublished master thesis]. Jönköping University.
CR  - 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
CR  - 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
CR  - Centers for Disease Control Prevention (2022). Autism spectrum disorder: Data & statistics on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/data.html.
CR  - 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
CR  - Corsello, C. (2005). Early Intervention in Autism. Infants & Young Children, 18, 74-85. https://doi.org/10.1097/00001163-200504000-00002
CR  - 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.
CR  - 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
CR  - 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
CR  - 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
CR  - 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
CR  - 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.
CR  - 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
CR  - Hasanoğlu, S. (2018). Zar hipotezi: “Her şey bir kabuk içerisindedir”. Hasan Kalyoncu Üniversitesi Psikoloji Araştırmaları Dergisi, Sayı 6, 44-46.
CR  - İgalçi, E. E. Ç. (2021). Erken Çocukluk döneminde sosyal bilişsel öğrenme kuramından hareketle değerler eğitiminde tasavvufî unsurlar. Balıkesir İlahiyat Dergisi, 14, 61-90.
CR  - 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
CR  - 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
CR  - Koyuncu, M., & Akman, B. (2018). Erken çocukluk döneminde düşünme becerilerinin gelişimi. Milli Eğitim Dergisi, 47(218), 5–20.
CR  - Kurşun, Z. (2023). Özel gereksinimli bireylerde sosyal beceri öğretimine ilişkin ülkemizde yapılan tezlerin incelenmesi. Journal of Sustainable Education Studies, 4(1), 27-40.
CR  - Mansur, M., Masyasari, R., Awad, F. B., & Asriyanti, A. (2022). Self acceptance in parents of children with autism. KnE Social Sciences, 453-461.
CR  - 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
CR  - 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
CR  - 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.
CR  - 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
CR  - 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
CR  - 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
CR  - Özer, M. (2021). 2-6 yaş arasında otizm spektrum bozukluğu tanılı çocuğu olan annelerin özel eğitim ve rehabilitasyon merkezlerinde sunulan hizmetlere ilişkin deneyimleri [Yayınlanmamış yüksek lisans tezi]. Marmara Universitesi.
CR  - Rakap, S. (2017). Türkiye’de otizm spektrum bozukluğu ve özel eğitim. Tohum Otizm Vakfı.
CR  - Rose, P., Beeby, J., & Parker, D. (1995). Academic rigour in the lived experience of researchers using phenomenological methods in nursing in nursing. Journal of Advanced Nursing, 21(6), 1123-1129. https://doi.org/10.1046/j.1365-2648.1995.21061123.x
CR  - Salomone, E., Shephard, E., Milosavljevic, B., Johnson, M. H., Charman, T., & Volein. (2018). Adaptive behaviour and cognitive skills: stability and change from 7 months to 7 years in siblings at high familial risk of autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 2901-2911. https://doi.org/10.1007/s10803-018-3554-5
CR  - Samaiya, A. (2022). Jean Piaget’s cognitive development. The International Journal of India Psychology, 10(1), 1–5. https://doi.org/10.25215/1001.155
CR  - Savucu, Y. (2020). Otizmli çocuklarda erken tanı, eğitim ve fiziksel aktivitenin önemi. International Journal of Sports, Exercise and Training Sciences, 6(3), 105-109. https://doi.org/10.18826/useeabd.716110
CR  - Selimoğlu, Ö. G., Özdemir, S., Töret, G., & Özkubat, U. (2013). Otizmli çocuğa sahip ebeveynlerin otizm tanılama sürecinde ve tanı sonrasında yaşadıkları deneyimlerine ilişkin görüşlerinin incelenmesi. International Journal of Early Childhood Special Education, 5(2), 129-161.
CR  - Sevinç, G. (2019). A review on the Neo-Piagetian theory of cognitive development. Ankara University Journal of Faculty of Educational Sciences, 52(2), 611–631. https://doi.org/10.30964/auebfd.470159
CR  - Siller, M., & Morgan, L. (2018). Systematic review of research evaluating parent-mediated interventions for young children with autism: Years 2013 to 2015. In M. Siller & L. Morgan (Eds.) Handbook of parent-implemented interventions for very young children with autism (1st ed., pp. 1-21). Springer. https://doi.org/10.1007/978-3-319-90994-3_1
CR  - Suizzo, M. A. (2000). The social-emotional and cultural contexts of cognitive development: Neo-Piagetian perspectives. Child Development, 71(4), 846–849. https://doi.org/10.1111/1467-8624.00191
S
urmen, A., Hidiroglu, S., Usta, H. H., Awiwi, M., Oguz, A. S., Karavus, M., & Karavus, A. (2015). A study exploring knowledge, attitudes and behaviours towards autism among adults applying to a Family Health Center in Istanbul. North Clin Istanb, 2(1), 13-18. https://doi.org/10.14744/nci.2015.83723
CR  - Tamis‐LeMonda, C. S., Shannon, J. D., Cabrera, N. J., & Lamb, M. E. (2004). Fathers and mothers at play with their 2‐and 3‐year‐olds: Contributions to language and cognitive development. Child Development, 75(6), 1806-1820.
CR  - Tekin-İftar E. (2018) Otizm spektrum bozukluğu olan çocuklar ve eğitimleri (2. Baskı). Vize Yayıncılık.
CR  - Tekindal, M., & Şerife, U. (2020). Content and process of phenomenological approach within the scope of qualitative research method. Ufkun Ötesi Bilim Dergisi, 20(1), 153-172.
CR  - Toper, F., & Özkan, Y. (2021). The experiences of families with autistic children with their difficulties. OPUS International Journal of Society Researches, 18(43), 6682-6707. https://doi.org/10.26466/opus.923379
CR  - Turan, B., Esin, İ. S., Abanoz, E., & Dursun, O. B. (2020). From suspicion to treatment: challenges in autism spectrum disorder from the perspective of families. Tıbbi Sosyal Hizmet Dergisi(15), 35-49. https://doi.org/10.46218/tshd.718067
CR  - Turgut, Ö. (2022). Supporting family resilience of the family of an individual with special needs: The role of the father. Resilience, 6(2), 209-220. https://doi.org/10.32569/resilience.1050653
CR  - Varol, N. (2006). Aile Eğitimi (2. baskı). Kök Yayıncılık.
CR  - Veraksa, N., & Veraksa, A. (2018). Lev Vygotsky’s cultural-historical theory of development and the problem of mental tools. Papeles del Psicólogo, 39(2), 150-154.
CR  - Wang, J., Zhou, X., Xia, W., Sun, C., Wu, L., & Wang, J. (2012). Autism awareness and attitudes towards treatment in caregivers of children aged 3–6 years in Harbin, China. Social Psychiatry and Psychiatric Epidemiology, 47, 1301-1308. https://doi.org/10.1007/s00127-011-0438-9
CR  - Yassıbaş, U. (2016). Otizm spektrum bozukluğu olan çocuğa sahip anne babaların yaşam deneyimlerine derinlemesine bakış. [Yayınlanmamış yüksek lisans tezi]. Anadolu Üniversitesi.
CR  - Yıldırım, A., & Simsek, H. (2018). Sosyal bilimlerde nitel araştırma yöntemleri (11 baski). Seçkin Yayıncılık.
CR  - Zabcı N., & Postacı Ş. (2022). Çocuk ve ergen psikanalizi: Kuramcılar ve kavramlar. Yapı Kredi Yayınları.
CR  - Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A., Shih, A., & Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 778-790. https://doi.org/10.1002/aur.2696
UR  - https://doi.org/10.37233/TRSPED.2024.0144
L1  - https://dergipark.org.tr/en/download/article-file/3607638
ER  -