OTİZM SPEKTRUM BOZUKLUĞU TANILI ÇOCUK SAHİBİ ANNELERİN DENEYİMLERİ

Yıl 2014, Cilt: 13 Sayı: 50, 96 - 111, 10.09.2014

Yeşim Güleç-aslan Hande Cihan Damla Altın

https://doi.org/10.17755/esosder.41128

Cited By: 8

Öz

Otizm spektrum bozukluğu (OSB) tanılı bireylerin aileleri, özellikle de anneleri, OSB'nun kendine özgü çeşitli güçlüklerinin etkisiyle bir takım olumsuz duygular ve deneyimler yaşayabilmektedirler. OSB'luğu olan bireylerin ailelerinin yaşantılarının incelendiği araştırmalar, ailelere yönelik hizmetlerin planlanmasında ve etkili bir şekilde uygulanmasında yol gösterici bir rol oynamaktadır. Bu çalışmada, bu çocukların annelerinin OSB deneyimleri ve OSB hakkındaki algıları fenomenolojik (olgubilimsel) desenle incelenmiştir. Veriler, mecazlarla (metafor) toplanmıştır ve betimsel olarak analiz edilmiştir. Annelerin OSB'na ilişkin mecazlarını ve bu mecazların anlamlarını içeren bulgular, ilgili alanyazın bağlamında tartışılarak, uygulama ve ileri araştırmalar doğrultusunda öneriler sunulmuştur.
Anahtar Kelimeler: Annelerin Deneyimleri, Fenomenolojik Desen, Otizm Spektrum Bozukluğu, Özel Eğitim, Stresle Başa Çıkma

Anahtar Kelimeler

Annelerin Deneyimleri, Fenomenolojik Desen, Otizm Spektrum Bozukluğu, Özel Eğitim, Stresle Başa Çıkma

LIVING WITH A CHILD WITH AUTISM SPECTRUM DISORDERS: EXPERIENCES OF MOTHERS

Öz

Abstract
The research about the experiences of mothers provides unique findings concerning their support. The goal of this study is to understand the experiences of 20 Turkish mothers of children with autism spectrum disorders (ASD). This study has been conducted by utilizing a phenomenological approach, which is a type of qualitative methodology that aims to explore an individual's personal experiences. Data were collected using metaphors, which are a valuable data collection tool for gathering deep and new insights into educational studies. This data will then be analyzed via descriptive analysis. The results discussed in terms of implications for future research and practices. We are expecting this study to provide new knowledge about the perspectives of mothers in different countries like Turkey.
Key Words: Attribution styles, Autism Spectrum Disorders, Coping, Mothers' Experience, Phenomenological Approach

Anahtar Kelimeler

Attribution styles, Autism Spectrum Disorders, Coping, Mothers’ Experience, Phenomenological Approach

Kaynakça

• Armstrong, S. L., Davis, H. S., & Paulson, E. J. (2011). The subjectivity problem: Improving triangulation approaches in metaphor analysis studies. International Journal of Qualitative Methods, 10, 151-163.
• Benson, P. R. (2006). The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 36, 685-695.
• Bilgin, H. ve Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish Mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92-98.
• Bishop, S., L., Richer, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112, 450-461.
• Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioral disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198. doi: 10.1111/j.1365-2788.2005.00768.x. Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195-207.
• Cavkaytar, A., Batu, S. ve Beklan Çetin, O (2008). Perspectives of Turkish mothers on having a child with developmental disabilities. International Journal of Special Education, 23, 102-109.
• Chang, M. Y., & McConkey, R. (2008). The perceptions and experiences of Taiwanese parents who have children with an intellectual disability. Journal of Disability, Development and Education, 55, 27-41.
• Creswell, W. J. (2005). Educational research. Upper Saddle River, N.J.: Pearson.
• Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder. Autism, 10, 463-47 doi:1177/1362361306066600.
• Daley, T., & Sigman, M. (2002). Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders, 32, 13-23.
• Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. J. Autism Dev. Disord., 38, 1278-1291. doi: 10.1007/s10803-007-0512-z.
• DeMeyer, M. K. (1979). Parents and children in autism. Washington, D. C.: V. H. Winston.
• Desai, M. U., Divan, G., Wertz F. J., & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry. 49, 613-637. doi: 10.1177/1363461512447139.
• Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallaghen, S. (2010). Living with children diagnosed with autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37, 14-23. doi: 10.1111/j.14678572010.00455.x.
• Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37, 39-52.
• Ekas, N. V., Lickenbrock, M., & Whitman, T. L. (2010). Optimism, social support, and wellbeing in mothers of children with autism spectrum disorder. J. Autism Dec. Disorder, 40, 1274-1284. doi: 10.1007/s10803-010-0986-y.
• Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27, 215-222. doi: 1080/136682502100000863 9.
• Gupta, A., & Singhal, N. (2004). Positive perceptions in parents of children with disabilities. Asia Pasific Disability Rehabilitation Journal, 15, 22-35.
• Hallahan, D. P., & Kaufmann, J. M. (2009). Exceptional Learners: Introduction to special education. Boston: Allyn & Bacon.
• Hasting, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in others and fathers of preschool and school-age children with autism. Autism, 9, 377-391. doi: 10.1177/1362361305056078.
• Holroyd, E. E. (2003). Chinese cultural influences on parental caregiving obligations toward children with disabilities. Qualitative Health Research, 13, 4-19. doi: 1177/1049732302239408.
• Jensen, D. F. N. (2006). Metaphors as a bridge to understanding educational and socialcontexts. International Journal of Qualitative Methods, 5, 1-17.
• Kara, E. (2008).Zihinsel engelli çocukları olan ailelerin çocuklarının durumunu dini açıdan değerlendirmeleri. OMÜ Đlahiyat Fakültesi Dergisi, 26-27, 317-331.
• Kenneth, W. P., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual & Developmental Disability, 34, 27-35.
• Koydemir, S. ve Tosun, Ü. (2009). Impact of autistic children on the lives of mothers. Procedia Social and Behavioral Sciences, 1, 2534-2540.
• Lyons, A. M., Leon, S. C., Roecker Phelps, C. A., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. J. Child Fam. Study, 19, 516-524. doi: 1007/s10826-009-9323-5.
• Mancil, G. R., Boyd, B. A., & Bedesem, P. (2009). Parental stress and autism: Are there useful coping strategies. Education and Training in Developmental Disabilities, 44 , 523-5
• Mandell, D. S., & Novak, M. (2005). The role of culture in families’ trearment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities, 11, 110-115. doi: 10.1002mrdd.20061.
• McCabe, H. (2008). Autism and family in the people’s republic of Chine: Learning from Parents’ Perspectives. Research and Practice for Persons with Severe Disabilities. 31, 37Özyürek, A. ve Tezel-Şahin, F. (2005). 5-6 yaş grubunda çocuğu olan ebeveynlerin tutumlarının incelenmesi. Gazi Eğitim Fakültesi Dergisi, 25, 19-34.
• Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability. New York: Guilford.
• Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (51–80). London: Sage.
• Tarakeshwar, N., & Pargament, K. I. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16, 247-260.
• Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academiy of Nurse Practitioners, 19, 251-260. doi. 10.1111/j.1745-7599.2007.00222.x.
• Üstüner Top, F. (2009). Otistik çocuğa sahip ailelerin yaşadıkları sorunlar ile ruhsal durumlarının değerlendirilmesi: Niteliksel Araştırma. 9, 34-42.
• Weiner, B. (1985). An attributional theory of achievement, motivation and emotion, Psychological Review, 92, 548-573.
• Werner De Grace (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, 543-550.
• Whittaker, P. (2002). Supporting families of preschool children with autism: What parents want and what helps. Autism, 6, 411-426.
• Woodgate, R. T., Ateah, C., & Secco, L. (2008). Living in world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075-1083. doi: 1177/1049732308320112.
• Yıldırım, A. ve Şimşek, H. (2005). Sosyal bilimlerde nitel araştırma yöntemleri. Ankara: Seçkin Yayıncılık. Yazar Notları
• Yazarlar, katılımcı annelere OSB yolculuklarını içtenlikle paylaştıkları için teşekkürlerini sunarlar. Ayrıca, çalışmada emekleri geçen Çağrı Çördük’e, Ebru Çelik’e, Đbrahim Çetin’e, Kezban Dündar’a, Kübra Günay’a, Mehmet Akgül’e ve Yasemin Şener’e teşekkür ederler. Bu çalışma, “Living with a child with Autism Spectrum Disorders (ASD): Experiences of Turkish mothers” başlıklı bildiri olarak, 2014, Eighth Annual Autism Conference’da, (Louisville, KY) poster bildiri olarak sunulmuştur.