Children with Williams Syndrome from Their Parents' Perspective

Öz

Williams Syndrome (WS) is among the neurodevelopmental disorders that occur in 1 in 7500 to 20,000 live births. Parents are unable to discover it right away after birth because it is uncommon. However, later on, they consult a doctor with certain health problems. As a result of health screenings, they are diagnosed with WS. The basic purpose of this study is to examine the characteristics of children with Williams Syndrome from their parents' perspective. Qualitative research method was adopted in this research and was conducted with a descriptive case design. For this study, a semi-structured interview form was created and interviews were conducted with 10 parents of children with WS. Interviews were transcribed, themes and subthemes were created, and content analysis was conducted. As a result of the content analysis, six themes were created: health problems, hobbies-phobias, cultural activities, learning quality, nutrition and physical features. Among health problems, heart disease was the most common. It has been determined that they enjoy music as a hobby but are afraid of loud noises as a phobia. In cultural activities, it was mentioned that they participated in musical events (such as mini concerts). It was mentioned that they sang music in cultural activities. Frequent reminders have been shown to be necessary for learning. It has been seen that they love dough products in nutrition. Among the most frequently observed physical features, most of them are thin. It follows that both teachers and families should have a great deal of hope while engaging in educational activities with children who have WS because these children are developable, teachable, and trainable. In addition, this study provided parents, teachers and friends of children with WS with the opportunity to get to know children with WS more closely. In the recommendations section of the study, suggestions for future studies are presented to new researchers based on the study findings.

Anahtar Kelimeler

• Williams Syndrome
• health problems
• cultural activities
• learning quality
• nutrition
• physical features
• hobby-phobias.

Ebeveynlerin Bakış Açısıyla Williams Sendromlu Çocuklar

Öz

Williams Sendromu (WS) 7500 ile 20.000 canlı doğumda bir görülen nörogelişimsel bozukluklar arasındadır. Nadir rastlanıldığı için ebeveynleri doğumdan hemen sonra fark edememektedir. Ancak ilerleyen zamanlarda belirli sağlık sorunları ile doktora başvurmaktadırlar. Sağlık taramaları sonucunda WS teşhisi almaktadırlar. Bu çalışmanın temel amacı Williams Sendromlu çocukların özelliklerini ebeveynlerinin bakış açısıyla incelemektir. Bu araştırmada nitel araştırma yöntemi benimsenmiş olup, betimleyici durum deseni ile yürütülmüştür. Bu çalışma için yarı yapılandırılmış görüşme formu oluşturularak, WS’li çocuğa sahip 10 tane ebeveyn ile görüşmeler yapılmıştır. Görüşmeler deşifre edilmiş, temalar ve alt temalar oluşturulmuş ve içerik analizi gerçekleştirilmiştir. İçerik analizi sonucunda sağlık sorunları, hobi-fobiler, kültürel faaliyetler, öğrenme özellikleri, beslenme ve fiziki özellikler adlı altı tema oluşturulmuştur. Sağlık sorunlarında, en çok kalp rahatsızlığı görülmüştür. Hobi olarak müzikten hoşlandıkları ancak fobi olarak yüksek sesten korktukları tespit edilmiştir. Kültürel faaliyetlerde ise müzik etkinliklerine (mini konserler gibi) katıldıklarından bahsedilmiştir. Öğrenme özellikleri arasında sık sık hatırlatmanın gerekli olduğu vurgulanmıştır. Beslenme de hamur ürünlerini sevdikleri görülmüştür. Fiziki özelliklerinde ise zayıf olmaları göze çarpmıştır. Sonuç olarak WS’li çocuklar ile eğitim öğretim faaliyetleri sürdürürken hem öğretmenler hem de aileler WS’li çocukların geliştirilebilirliği, öğretilebilirliği, eğitilebilirliği konusunda umudu yüksek düzeyde olması gerektiği söylenebilir. Ayrıca bu çalışmayla WS’li çocuğa sahip ebeveynler, öğretmenleri ve arkadaşlarına WS’li çocukları daha yakından tanıma olanağı sunulmuştur. Öneriler kısmında ise çalışma bulgularına dayalı olarak gelecek araştırmacılara yeni çalışmalar için öneriler sunulmuştur.

Anahtar Kelimeler

• Williams Sendromu
• sağlık sorunları
• kültürel faaliyetler
• öğrenme özellikleri
• beslenme
• fiziki özellikler
• hobi-fobiler.

Kaynakça

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