Serebral Palsi Farkındalık Çalışması: Kayseri İli Örneği

Amaç: Bu çalışmada serebral palsi (SP) ile ilgili toplumsal farkındalığın Kayseri örneğiyle araştırılması amaçlanmıştır.Gereç ve Yöntem: Çalışmaya Kayseri’de ikamet eden 18-68 yaş arası 311 kişi dahil edildi. SP farkındalığı yazarların kendi oluşturdukları ‘Serebral Palsi Farkındalık Anketi’(SPFA) ile değerlendirildi. Çalışma verileri çevrimiçi (online) formlar aracılığıyla toplandı. Katılımcıların ankette yer alan her madde için ‘evet’, ‘hayır’ veya ‘fikrim yok’ seçeneklerinden kendilerine en uygun olanı işaretlemeleri istendi.Bulgular: Katılımcıların yaş ortalamaları 33,5±12,6 idi. SPFA’da yer alan, SP’de beyin etkilenimi, etyoloji, bulaşıcılık, ilerleyici olup olmaması, tedavi, genetik geçiş, yürüme yeteneği, konuşma yeteneği, eğitim durumu ve prognozu ile ilgili maddeler incelendiğinde tüm katılımcıların en yüksek ‘evet’ cevabını (n=208; %66,9) verdiği madde “Serebral palsi bulaşıcı bir hastalık değildir.”; en yüksek ‘hayır’ cevabını (n=139; %44,7) verdikleri madde “Serebral palsi ilerleyici bir hastalık değildir.” ve en yüksek ‘fikrim yok’ cevabını (n=164; %52,7) verdikleri madde ise “Serebral palsinin tamamen tedavisi mümkün değildir.” oldu. Kadın (n=206) ve erkek (n=105) cinsiyetin cevapları karşılaştırıldığında tüm sorulara kadınların erkeklere göre daha yüksek oranda doğru cevap verdiği, bazı maddelerde bu farkın istatistiksel olarak anlamlı olduğu görüldü(p<0,05).Sonuç: SPFA sonuçlarına göre çok sayıda katılımcının ‘fikrim yok’ seçeneğini işaretlemesi, SP ile ilgili toplum farkındalığının düşük olduğuna dair ipucu verebilir. SP’ nin ülkemizde görülme oranı düşünüldüğünde, toplumun gözünde SP imajını görebilmek, toplumsal farkındalıkta eksik yönlerin belirlenmesi ve bu yöndeki eksikliklerin giderilmesine dair yapılacak çalışmalar için önemli olabilir. Bu sayede SP’li bireylerin topluma kazandırılmasında artış ve kolaylık olacağı görüşündeyiz.

Anahtar Kelimeler:

engelli çocuklar, serebral palsi, toplum farkındalığı, sosyal algı, Uluslararası İşlevsellik Engellilik ve Sağlık Sınıflandırması

Cerebral Palsy Awareness Study: The Case of Kayseri Province

Objectives: In this study it was aimed to investigate the public awareness about cerebral palsy (CP) with example of Kayseri province. Materials and Methods: Three hundred eleven participants between ages of 18-68 residing in Kayseri were included. CP awareness was evaluated with the "Cerebral Palsy Awareness Questionnaire" (CPAQ) created by the authors. Research data were collected via online forms. For each itemin the questionnaire, the participants were asked to mark most appropriate option from 'yes' (Y), 'no' (N) or 'no idea' (NI).Results: The mean age of the participants was 33.5±12.6. When the items in CPAQ related to brain involvement, etiology, contagiousness, whether it is progressive or not, treatment, genetic transmission, walking ability, speaking ability, education and prognosis in CP were investigated, the item to which all participants gave the highest 'yes' answer (n=208; 66.9%) was "cerebral palsy is not a contagious disease"; the item to which they gave the highest "no" answer (n=139; 44.7%) was "cerebral palsy is not a progressive disease" and the highest "no idea" answer (n=164; 52.7%) was "cerebral palsy cannot be completely cured". When the answers of female (n=206) and male (n=105) genders were compared, it was seen that women gave more correct answers to all questions than men, and his difference was statistically significant in some items (p<0.05).Conclusion: According to the CPAQ results, the fact that a large number of participants marked the option "no idea" may give a clue that public awareness of CP is low. Considering the prevalence of CP in our country, it may be important to see perception of CP in community for the studies to be carried out to determine the deficiencies in social awareness and to eliminate the deficiencies in this direction. In this way, we believe that there will be an increase and convenience in reintegrating individuals with CP into society.

Keywords:

children with disabilities, cerebral palsy, public awareness, social perception, International Classification of Functioning Disability and Health,

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