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OTİZM SPEKTRUM BOZUKLUĞU OLAN ÇOCUĞUM VAR: BİR OLGUBİLİM ÇALIŞMASI

Year 2021, Issue: 60, 73 - 95, 12.11.2021

Abstract

Bu araştırmada Otizm Spektrum Bozukluğu (OSB) olan çocuğa sahip anne babaların gözünden nitel yaklaşımın gücünü kullanarak anne babaların yaşadıkları duygu ve düşüncelerin neler olduğunun belirlenmesi, soruna daha kapsamlı açıklamalar getirilmesi amaçlanmıştır. Araştırmanın yöntemi, nitel araştırma yöntemlerinden olgubilim deseninde tasarlanmıştır. Araştırmanın katılımcıları, çocukları OSB tanısı alan sekiz anne ve yedi baba olmak üzere toplam 15 ebeveyndir. Çalışmada OSB olan çocuğa sahip anne babaların tanılama süreci ve sonrasında yaşadıkları deneyimlerin, beklenti ve önerilerin belirlenmesi amacıyla yarı yapılandırılmış görüşme formu kullanılmıştır. Elde edilen veriler içerik analizi tekniğiyle analiz edilmiştir. Araştırmada katılımcılar ile yapılan nitel görüşmeler sunucunda dört tema (tanı öncesi ve sürecinde yaşananlar, tanı sonrası yaşananlar, özel eğitim sürecinde yaşananlar ve öneriler) belirlenmiştir. Araştırma bulgularında katılımcıların çoğu, psikolojik olarak zor günler geçirdiklerini, aile ve sosyal hayatlarının bu durumdan etkilendiğini, özel eğitimin faydalı olduğunu, ancak bazı eksikliklerin devam ettiğini ifade etmişlerdir. Araştırma sonucunda; OSB olan çocukların anne babalarının danışmanlık ve destek hizmetleri almaları gerektiğine ilişkin öneriler sunulmuştur.

References

  • Akkök, F., Aşkar, P., & Karancı, N. (1992). Özürlü bir çocuğa sahip anne babalardaki stresin yordanması. Özel Eğitim Dergisi, 1(2), 8-12.
  • Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194-204.
  • Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Res Autism Spectr Disord, 4(2), 217-228.
  • Bertacchi, J. (1996). Relationship-based organizations. Zero to Three, 17, 1-7.
  • Bilgin, H., & Küçük, L. (2010). Raising an autistic child: Perspectives from turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23(2), 92-99. doi: 10.1111/j.1744-6171.2010.00228.x
  • Büyüköztürk, Ş., Kılıç-Çakmak, E., Akgün, Ö., Karadeniz, Ş., & Demirel, F. (2008). Bilimsel araştırma yöntemleri. Ankara: Pegem A Yayıncılık.
  • Cavkaytar, A. (2013). Ailelerle işbirliği. S. Eripek (Ed.), Özel eğitim içinde (s. 53-65). Eskişehir: Anadolu Üniversitesi Yayınları.
  • Chapman, E., & Smith, J. A. (2002). Interpretative phenomenological analysis and the new genetics. Journal of health psychology, 7(2), 125-130.
  • Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. SAGE Publications Inc.
  • Chia, N. K. H. (2012). Autism enigma: The need to include savant and cryptosavant in the current definition. Academic Research International, 2(2), 234-240.
  • Chua, A. C. K. (2016). Fındıng meanıng ın lıfe for parents of chıldren wıth autısm spectrum dısorder: a salutogenıc approach. European journal of special education research. 1(2), 1-12, http://dx.doi.org/10.5281/zenodo.57106
  • Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356-366. https://doi.org/10.1177/1744629515577876
  • Creswell, J. W. (2003). Research design: qualitative, quantitative and mixed methods approache. California: Sage Publication.
  • Creswell, J. W. (2005). Educational research. planning, conducting and evaluating quantitative and qualitative research. New Jersey: Pearson Education.
  • Demir, T., Mukaddes, N. M., Eralp-Demir, D. & Bilge, S. (2000). Otistik bozukluğu olan çocukların annelerinde birinci eksende yer alan psikiyatrik bozuklukların araştırılması. Düşünen Adam, 13(2), 82-86.
  • Denzin, N. (1989). Interpretive interactionism. CA: Sage Publications.
  • Diken, I. H. (2009). Turkish mothers’ self-efficacy beliefs and styles of interactions with their children with language delays. Early Child Development and Care, 179(4), 425-436.
  • Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of autism and developmental disorders, 34(2), 211-222.
  • Fisman, S. N., Wolf, L. C., & Noh, S. (1989). Marital intimacy in parents of exceptional children. Canada Journal Psychiatry, 34(6), 519-25.
  • Girli, A. (2004).Otistik çocuklar ve aileleri aile eğitim programları: Kuramsal yaklaşımlar ve uygulamalar. İzmir: Işık Özel Eğitim Yayınları.
  • Green, S. E. (2003). “What do you mean ‘what’s wrong with her?”: Stigma and the lives of families of children with disabilities. Social Science & Medicine 57, 1361-1374. doi: 10.1016/S0277-9536(02)005117
  • Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D, & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism 9(4), 377-391.
  • Husserl, E. (1970). The crisis of European science and transcendental phenomenology. IL: Northwestern University Press.
  • Issel, L. M. (2004). Health program planning and evaluation: A practical, systematic approach. Sudbury. MA: Jones & Bartlett Publishers.
  • Kaner, S., & Bayraklı, H. (2009). Zihinsel engelli ve engelli olmayan çocuklu annelerde yılmazlık, sosyal destek ve stresle başa çıkma becerileri. Journal of Educational Sciences & Practices, 8(15),115-133.
  • King, G., Zwaigenbaum, L., Bates, A., Baxter, D., & Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school‐aged children with autism spectrum disorders and Down syndrome. Child: care, health and development, 38(6), 817-828.
  • Koydemir-Özden, S. & Tosun, Ü. (2010). A qualitative approach to understending turkish mothers of children with autism: Implications for counselling. Australian Journal of Guidance & Counselling, 20(1), 55-68.
  • Krausz, M. & Meszaros, J. (2005). The retrospective experiences of a mother of a child with autism. The International Journal of Special Education, 20(2), 36-46.
  • Küçüker, S. (2001). Erken eğitimin gelişimsel geriliği olan çocukların anne-babalarının stres ve depresyon düzeyleri üzerindeki etkisinin incelenmesi. Özel Eğitim Dergisi, 3(1), 1-11.
  • Lee, Le-Ching., Harrington, R. A., Louie, B. B. & Newschaffer, C. J. (2008). Children with autism: quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147-1160. doi: 10.1007/s10803-007-0491-0
  • Marcus, L. M., Kunce, L. J., & Schopler, E. (2005). Working with Families. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders: Assessment, interventions, and policy (p. 1055–1086). John Wiley & Sons, Inc.. https://doi.org/10.1002/9780470939352.ch16
  • Marton, F. (1988). Phenomenography: a research approach to ınvestigating different understandings of reality. In R. R. Sherman & R.B.Webb (Eds). Qualitative research in education: Focus and education (pp. 140-160). London: Routledge.
  • Miles, M. B., Huberman, A.M., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook. London: Sage.
  • Mitchell, C., & Holdt, N. (2014). The search for a timely diagnosis: parents’ experiences of their child being diagnosed with an autistic spectrum disorder. Journal of Child & Adolescent Mental Health, 26(1), 49-62.
  • Moss, B., & Gotss, E. A. (1998). Relationship-based early childhood intervention: A progress report from the trenches. Zero to Three, 18, 24-32.
  • Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745-762.
  • Özdemir, S. (2007). A paradigm shift in early intervention services: From child centeredness to family centeredness. Dil ve Tarih Coğrafya Dergisi, 47(2), 1325.
  • Özokçu, O., & Canpolat, M. (2013). Grup Rehberliği Programının Zihinsel Yetersizliği Olan Çocuğa Sahip Annelerin Stres Düzeylerine Etkisi. Mustafa Kemal Üniversitesi Sosyal Bilimler Enstitüsü Dergisi, 10(24), 181-196.
  • Pierangelo, R., & Giuliani, G. (2007). EDM: The educator’s diagnostic manual of disabilities and disorders. San Francisco, CA: John Wiley and Sons.
  • Pottie C.G., & Ingram, K.M. (2008). Daily stress, coping, and well-being in parents of children with autism: a multilevel modeling approach. J Fam Psychol, 22(6), 855-864.
  • Samadi, S. A., & McConkey, R. (2014).The impact on Iranian mothers and fathers who have children with an autism spectrum disorder. J Intellect Disabil Res, 58(3), 243-254.
  • Sameroff, A. J., & Fiese, B. H. (2000). Transactional regulation: The developmental ecology of early intervention. Handbook of early childhood intervention, 2, 135-159.
  • 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.
  • Tümlü, Ö. G. C., & Çapan, B. E. (2018). Engelli çocuğa sahip ebeveynlerin duygusal sağırlık ve psikolojik iyi oluş düzeylerinin incelenmesi. Kalem Eğitim ve İnsan Bilimleri Dergisi, 8(2), 493-518, doi: 10.23863/kalem.2019.112
  • Wing, L. (2012). Otizm el rehberi (3. bs., S. Kunt, Çev.). İstanbul: Sistem Yayıncılık.
  • Yassıbaş, U., & Çolak, A. (2019). Otizm Spektrum Bozukluğu Olan Çocuğa Sahip Anne-Babaların Yaşam Deneyimlerine Derinlemesine Bakış. Eğitim ve Bilim, 44(198), 435-467. http://dx.doi.org/10.15390/EB.2019.7366
  • Yıldırım, A., & Şimşek, H. (2011). Sosyal bilimlerde nitel araştırma yöntemleri. Ankara: Seçkin Yayıncılık.

I HAVE A CHILD WITH AUTISM SPECTRUM DISORDER: A CASE STUDY

Year 2021, Issue: 60, 73 - 95, 12.11.2021

Abstract

In this study, it is aimed to use qualitative excavation from the perspective of parents who have children with Autism Spectrum Disorder (ASD) groups, what are the feelings and thoughts of the parents, and to provide more comprehensive explanations to the problem. The method of the research is to study the phenomenological pattern from qualitative research. The participants of the study were 15 parents, eight mothers and seven fathers whose children were diagnosed with ASD. In the study, a structured interview form was used instead of the experiences, expectations and suggestions of the parents of children with ASD during the diagnosis process and afterwards. It was analyzed with the content analysis technique provided. Receiving four themes (pre-diagnosis and actualization, post-diagnosis inheritance, special education process initiators and recommendations) in qualitative interviews with the participants in the research. In the research findings, they stated that they had psychologically difficult days, family and social life were affected by this situation, special education was beneficial, but some deficiencies continued. About the research; suggestions were made that parents of children with ASD should receive counseling and support services.

References

  • Akkök, F., Aşkar, P., & Karancı, N. (1992). Özürlü bir çocuğa sahip anne babalardaki stresin yordanması. Özel Eğitim Dergisi, 1(2), 8-12.
  • Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194-204.
  • Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Res Autism Spectr Disord, 4(2), 217-228.
  • Bertacchi, J. (1996). Relationship-based organizations. Zero to Three, 17, 1-7.
  • Bilgin, H., & Küçük, L. (2010). Raising an autistic child: Perspectives from turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23(2), 92-99. doi: 10.1111/j.1744-6171.2010.00228.x
  • Büyüköztürk, Ş., Kılıç-Çakmak, E., Akgün, Ö., Karadeniz, Ş., & Demirel, F. (2008). Bilimsel araştırma yöntemleri. Ankara: Pegem A Yayıncılık.
  • Cavkaytar, A. (2013). Ailelerle işbirliği. S. Eripek (Ed.), Özel eğitim içinde (s. 53-65). Eskişehir: Anadolu Üniversitesi Yayınları.
  • Chapman, E., & Smith, J. A. (2002). Interpretative phenomenological analysis and the new genetics. Journal of health psychology, 7(2), 125-130.
  • Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. SAGE Publications Inc.
  • Chia, N. K. H. (2012). Autism enigma: The need to include savant and cryptosavant in the current definition. Academic Research International, 2(2), 234-240.
  • Chua, A. C. K. (2016). Fındıng meanıng ın lıfe for parents of chıldren wıth autısm spectrum dısorder: a salutogenıc approach. European journal of special education research. 1(2), 1-12, http://dx.doi.org/10.5281/zenodo.57106
  • Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356-366. https://doi.org/10.1177/1744629515577876
  • Creswell, J. W. (2003). Research design: qualitative, quantitative and mixed methods approache. California: Sage Publication.
  • Creswell, J. W. (2005). Educational research. planning, conducting and evaluating quantitative and qualitative research. New Jersey: Pearson Education.
  • Demir, T., Mukaddes, N. M., Eralp-Demir, D. & Bilge, S. (2000). Otistik bozukluğu olan çocukların annelerinde birinci eksende yer alan psikiyatrik bozuklukların araştırılması. Düşünen Adam, 13(2), 82-86.
  • Denzin, N. (1989). Interpretive interactionism. CA: Sage Publications.
  • Diken, I. H. (2009). Turkish mothers’ self-efficacy beliefs and styles of interactions with their children with language delays. Early Child Development and Care, 179(4), 425-436.
  • Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of autism and developmental disorders, 34(2), 211-222.
  • Fisman, S. N., Wolf, L. C., & Noh, S. (1989). Marital intimacy in parents of exceptional children. Canada Journal Psychiatry, 34(6), 519-25.
  • Girli, A. (2004).Otistik çocuklar ve aileleri aile eğitim programları: Kuramsal yaklaşımlar ve uygulamalar. İzmir: Işık Özel Eğitim Yayınları.
  • Green, S. E. (2003). “What do you mean ‘what’s wrong with her?”: Stigma and the lives of families of children with disabilities. Social Science & Medicine 57, 1361-1374. doi: 10.1016/S0277-9536(02)005117
  • Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D, & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism 9(4), 377-391.
  • Husserl, E. (1970). The crisis of European science and transcendental phenomenology. IL: Northwestern University Press.
  • Issel, L. M. (2004). Health program planning and evaluation: A practical, systematic approach. Sudbury. MA: Jones & Bartlett Publishers.
  • Kaner, S., & Bayraklı, H. (2009). Zihinsel engelli ve engelli olmayan çocuklu annelerde yılmazlık, sosyal destek ve stresle başa çıkma becerileri. Journal of Educational Sciences & Practices, 8(15),115-133.
  • King, G., Zwaigenbaum, L., Bates, A., Baxter, D., & Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school‐aged children with autism spectrum disorders and Down syndrome. Child: care, health and development, 38(6), 817-828.
  • Koydemir-Özden, S. & Tosun, Ü. (2010). A qualitative approach to understending turkish mothers of children with autism: Implications for counselling. Australian Journal of Guidance & Counselling, 20(1), 55-68.
  • Krausz, M. & Meszaros, J. (2005). The retrospective experiences of a mother of a child with autism. The International Journal of Special Education, 20(2), 36-46.
  • Küçüker, S. (2001). Erken eğitimin gelişimsel geriliği olan çocukların anne-babalarının stres ve depresyon düzeyleri üzerindeki etkisinin incelenmesi. Özel Eğitim Dergisi, 3(1), 1-11.
  • Lee, Le-Ching., Harrington, R. A., Louie, B. B. & Newschaffer, C. J. (2008). Children with autism: quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147-1160. doi: 10.1007/s10803-007-0491-0
  • Marcus, L. M., Kunce, L. J., & Schopler, E. (2005). Working with Families. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders: Assessment, interventions, and policy (p. 1055–1086). John Wiley & Sons, Inc.. https://doi.org/10.1002/9780470939352.ch16
  • Marton, F. (1988). Phenomenography: a research approach to ınvestigating different understandings of reality. In R. R. Sherman & R.B.Webb (Eds). Qualitative research in education: Focus and education (pp. 140-160). London: Routledge.
  • Miles, M. B., Huberman, A.M., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook. London: Sage.
  • Mitchell, C., & Holdt, N. (2014). The search for a timely diagnosis: parents’ experiences of their child being diagnosed with an autistic spectrum disorder. Journal of Child & Adolescent Mental Health, 26(1), 49-62.
  • Moss, B., & Gotss, E. A. (1998). Relationship-based early childhood intervention: A progress report from the trenches. Zero to Three, 18, 24-32.
  • Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745-762.
  • Özdemir, S. (2007). A paradigm shift in early intervention services: From child centeredness to family centeredness. Dil ve Tarih Coğrafya Dergisi, 47(2), 1325.
  • Özokçu, O., & Canpolat, M. (2013). Grup Rehberliği Programının Zihinsel Yetersizliği Olan Çocuğa Sahip Annelerin Stres Düzeylerine Etkisi. Mustafa Kemal Üniversitesi Sosyal Bilimler Enstitüsü Dergisi, 10(24), 181-196.
  • Pierangelo, R., & Giuliani, G. (2007). EDM: The educator’s diagnostic manual of disabilities and disorders. San Francisco, CA: John Wiley and Sons.
  • Pottie C.G., & Ingram, K.M. (2008). Daily stress, coping, and well-being in parents of children with autism: a multilevel modeling approach. J Fam Psychol, 22(6), 855-864.
  • Samadi, S. A., & McConkey, R. (2014).The impact on Iranian mothers and fathers who have children with an autism spectrum disorder. J Intellect Disabil Res, 58(3), 243-254.
  • Sameroff, A. J., & Fiese, B. H. (2000). Transactional regulation: The developmental ecology of early intervention. Handbook of early childhood intervention, 2, 135-159.
  • 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.
  • Tümlü, Ö. G. C., & Çapan, B. E. (2018). Engelli çocuğa sahip ebeveynlerin duygusal sağırlık ve psikolojik iyi oluş düzeylerinin incelenmesi. Kalem Eğitim ve İnsan Bilimleri Dergisi, 8(2), 493-518, doi: 10.23863/kalem.2019.112
  • Wing, L. (2012). Otizm el rehberi (3. bs., S. Kunt, Çev.). İstanbul: Sistem Yayıncılık.
  • Yassıbaş, U., & Çolak, A. (2019). Otizm Spektrum Bozukluğu Olan Çocuğa Sahip Anne-Babaların Yaşam Deneyimlerine Derinlemesine Bakış. Eğitim ve Bilim, 44(198), 435-467. http://dx.doi.org/10.15390/EB.2019.7366
  • Yıldırım, A., & Şimşek, H. (2011). Sosyal bilimlerde nitel araştırma yöntemleri. Ankara: Seçkin Yayıncılık.
There are 47 citations in total.

Details

Primary Language Turkish
Journal Section Makaleler
Authors

Murat Canpolat 0000-0003-2106-6474

Osman Özokcu

Publication Date November 12, 2021
Submission Date May 7, 2021
Published in Issue Year 2021 Issue: 60

Cite

APA Canpolat, M., & Özokcu, O. (2021). OTİZM SPEKTRUM BOZUKLUĞU OLAN ÇOCUĞUM VAR: BİR OLGUBİLİM ÇALIŞMASI. Mehmet Akif Ersoy Üniversitesi Eğitim Fakültesi Dergisi(60), 73-95.