Serebral Palside Dil ve Konuşma Bozukluklarına Yönelik Farkındalık Çalışması

Öz

Amaç: Çalışmanın amacı serebral palsi (SP) ve SP’li bireylerin dil ve konuşma bozukluklarına yönelik toplumsal farkındalığın incelenmesidir. Ayrıca toplumsal farkındalığın SP’li yakını olan ve olmayan katılımcılarda değişiminin araştırılması amaçlanmıştır. Örneklem ve Yöntem: Araştırmaya 57 kadın ve 38 erkek olmak üzere 95 kişi katılmıştır. Literatürdeki yayınlar incelenerek geliştirilen Google anket formu kullanılmıştır. Toplam 18 sorudan oluşan formda; katılımcıların demografik bilgileri, SP hakkındaki genel bilgileri, SP’de konuşma, dil, beslenme ve yutma bozuklukları hakkındaki farkındalıkları sorgulanmaktadır. Bulgular: Katılımcıların %80’inin (n=76) SP’li bir yakını yoktu. SP'li yakını olmayanların %59.2'si ‘‘SP ilerleyici bir hastalık değildir’’ ve %56.6'sı ‘‘SP'li çocuğun kardeşlerinin de SP'li olması beklenmez’’ sorularında fikri olmadığını belirtti. SP'li yakını olan bireylerin %36.3'ünün SP'nin ilerleyici bir hastalık olup olmadığı konusunda fikri yoktu. Tüm bireylerin %51.6'sının SP'li bireylerde disfaji, %50.5'inin ise beslenme güçlüğü hakkında fikri olmadığı tespit edildi. SP'li yakını olmayan bireylerin yarısından fazlası dil ve konuşma ile ilgili 8 sorudan 6'sı hakkında fikri olmadığını belirtti. Sonuç: SP'li yakını olan bireylerin genel bilgi düzeyi ve genel farkındalığının daha yüksek olduğu görülmüştür. Tüm bireyler için en az farkındalığın SP'de yutma ve beslenme bozuklukları konusunda olduğu belirlenmiştir. Toplumun SP ve SP’li bireylerin dil, konuşma, beslenme ve yutma bozukluğuna yönelik farkındalığın artması ve daha bilinçli hale gelmesi; bireylerin aktivitelere, iletişime ve hayata katılımları ve yaşam kalitelerinin artmasını destekleyebilir. Bu alanda toplumun farkındalığını ve bilgi düzeyini artırmak amacıyla eğitimler, seminerler düzenlenebilir; televizyon ve sosyal medya kullanılarak toplumsal farkındalık çalışmaları yürütülebilir.

Anahtar Kelimeler

• Farkındalık
• serebral palsi
• yutma
• beslenme
• dil ve konuşma

Awareness Study on Speech and Language Disorders in Cerebral Palsy

Öz

Aim: The aim of the study was to examine the social awareness of cerebral palsy (CP) and speech and language disorders in individuals with CP. It was also aimed to investigate the change in social awareness among participants whether they have a relative with CP. Subjects and Method: 95 participants, 57 women and 38 men, participated in the study. A Google survey form developed based on literature review was used. In the form consisting of a total of 18 questions; demographic information of the participants, general information about CP, awareness of speech, language, feeding, and swallowing disorders in CP are questioned. Results: 80% (n = 76) of the participants did not have a relative with CP. Among those who had no relatives with CP, 59.2% stated that they had no opinion about the questions "CP is not a progressive disease" and 56.6% stated that "siblings of children with CP are not expected to have CP". Among the individuals with relatives with CP, 36.3% had no idea whether CP was a progressive disease or not. It was determined that 51.6% of all individuals had no opinion about dysphagia in individuals with CP, followed by 50.5% about feeding difficulties. More than half of those who had no relatives with CP stated that they had no opinion on 6 out of 8 questions related to speech and language. Conclusions: It was observed that the general knowledge level and general awareness of individuals with relatives with CP were higher. Swallowing and feeding difficulties in CP were the least understood by all. Being more aware of speech, language, feeding, and swallowing difficulties in CP can help people participate in activities, communication, and living and improve their quality of life. Trainings, seminars, and TV and social media campaigns can raise public awareness in this area. More than half of those without relatives with CP stated that they had no opinion on 6 out of 8 questions related to speech and language. Conclusions: Those with relatives with CP had better levels of knowledge regarding CP and speech, language, feeding, and swallowing than those without. Swallowing and feeding difficulties in CP were least understood by all. Being more aware of speech, language, feeding, and swallowing difficulties in CP can help people participate in activities, communication, and living and improve their quality of life. Trainings, seminars, and TV and social media campaigns can raise public awareness in this area.

Anahtar Kelimeler

• Awareness
• cerebral palsy
• deglutition
• feeding
• speech and language

Kaynakça

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