Otizm Spektrum Bozukluğuna Sahip Çocuğun Yaşamına Biyoekolojik Bakış

Yıl 2023, Cilt: 24 Sayı: 4, 523 - 541, 01.12.2023

Münire Aydilek Çiftçi , Uğur Hassamancıoğlu , Demet Vadi , İsmail Berat Uzun

https://doi.org/10.21565/ozelegitimdergisi.1218579

Cited By: 1

Öz

Giriş: Bu çalışmada, otizm spektrum bozukluğu olan çocukların yaşamını biyoekolojik kuram bakış açısıyla betimsel olarak ortaya koymak amaçlanmıştır.
Yöntem: Araştırma, bireylerin tecrübe ettikleri şeyi nasıl betimledikleri ve nasıl deneyimlediklerine yoğunlaşan betimleyici/tanımlayıcı fenomenolojik bir çalışma olarak desenlenmiştir. Betimleyici/tanımlayıcı fenomenolojinin çıkış noktası deneyimlenen olayların katılımcılar tarafından günlük yaşam perspektifinden somut betimlemelerini içermektedir. Araştırmaya otizm spektrum bozukluğu olan çocuğa bakım veren 17 kişi katılmıştır. Verilerin toplanmasında yarı-yapılandırılmış görüşme tekniği kullanılmıştır.
Bulgular: Veri analizleri sonucunda mikrosistem temasında bakım veren ve çocuk, diğer aile bireyleri ve çocuk, yakın çevre ve çocuk, öğretmen ve çocuk, okul; mezosistem temasında sosyal alan bağları, egzosistem temasında ebeveyn ve öğretmen; makrosistem temasında eğitim sistemi, destek, toplum, kanunlar ve iletişim araçları; kronosistem temasında zaman ve katılım alt temaları ortaya çıkmıştır.
Tartışma: Çocuğun otizm spektrum bozukluğu tanısı almasıyla birlikte aile üyelerinin kendi içlerinde ve toplumdaki diğer insanlarla etkileşimleri farklılaşmaktadır. Anne, baba ve kardeşler de dahil olmak üzere diğer bireylerin otizm spektrum bozukluğu tanısını kabul düzeyleri, kişilik özellikleri, otizm spektrum bozukluğu hakkındaki fikirleri gibi birçok faktör kişilerarası iletişimde belirleyici olmuş olabilir. Öğretmenlerin yaklaşımına ilişkin görüşler ise öğretmenlerin almış oldukları eğitim ve kişilik özellikleri ile açıklanabilir. Ayrıca okulun sahip olduğu kaynaklar ya da okul personelinin engelliliği kabul düzeyi gibi değişkenler de sonuçlarda etkili olmuş olabilir.
Sonuç ve Öneriler: Çocuklara bakım veren birincil kişilerin anneler olduğu, ebeveynlerin sahip oldukları sosyo-ekonomik özelliklerin ve öğretmenlerin kişilik özelliklerinin çocukların gelişim ve eğitimini etkilediği, toplumun çocuklar ve konu hakkında yeterli bilgi sahibi olmayarak çocuklara karşı önyargılı ve mesafeli olduğu görülmüştür. Toplumsal yönde insanların farkındalıklarını arttırmaya yönelik çalışmaların nitelik ve nicelik olarak geliştirilmesi beklenmektedir. Yeterli maddi gelirleri olmayan ebeveynler, çocuklarına ihtiyacı olan bakımı ve eğitimi sunamadıklarını ifade etmişlerdir. Sivil toplum kuruluşlarının otizm spektrum bozukluğu olan çocukların duyu bütünleme, spor faaliyetleri, psikoloji ve beslenme gibi farklı disiplin alanlarında eğitimlere ve desteğe ulaşımlarına yardımcı olabilecekleri düşünülmektedir.

Anahtar Kelimeler

Otizmli çocuklar, biyoekolojik model, ekolojik sistemler kuramı, ekolojik, özel gereksinimli çocuğu olan aileler, aile, fenomenolojik araştırma

A Bioecological Approach to the Life of a Child with Autism Spectrum Disorder

Öz

Introduction: The aim of this study was to examine the lives of children with autism spectrum disorder from the perspective of the bioecological theory.
Method: The research was designed as a descriptive phenomenological study focusing on the participants' descriptions and experiences of living with autism spectrum disorder. The starting point of descriptive phenomenology involves concrete descriptions of the events experienced by the participants from the perspective of their everyday life. Seventeen caregivers of children with autism spectrum disorder participated in the study. Semi-structured interview technique was used to collect the data.
Findings: As a result of data analysis, the following sub-themes emerged: caregiver and child, other family members and child, immediate environment and child, teacher and child, the school in the microsystem; social field ties in the mesosystem; parent and teacher in the exosystem; the education system, support, community, laws, and communication tools in the macrosystem; and time and participation in the chronosystem.
Discussion: When a child is diagnosed with autism spectrum disorder, the interactions of family members within themselves and with other people in society differ. Many factors such as the level of acceptance of the diagnosis of autism spectrum disorder by other individuals including parents and siblings, personality traits, and their opinions about autism spectrum disorder may have been determinant in interpersonal communication. The views on the teachers' approach can be explained by the education and personality traits of the teachers. In addition, variables such as the resources of the school or the level of acceptance of disability by the school staff may also have been effective in the results.
Conclusion and Recommendations: Mothers were the primary caregivers of children, that the socioeconomic characteristics of parents and the personality traits of teachers affected children's development and education, and that the society was prejudiced and distant towards children due to lack of knowledge about children and the subject. It was expected that the quality and quantity of social awareness-raising activities would be improved. Parents who did not have sufficient financial income stated that they could not provide their children with the care and education they needed. It is believed that non-governmental organizations can help children with autism spectrum disorder access training and support in different disciplines such as sensory integration, sports activities, psychology, and nutrition.

Anahtar Kelimeler

Children with autism, bioecological model, ecological systems theory, ecological, families with children with special needs, family, phenomenological research

Kaynakça

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