Cerebral Palsy Awareness Study: The Case of Kayseri Province

Year 2022, , 781 - 795, 31.12.2022

Büşra Kepenek Varol , Özlem Menevşe

https://doi.org/10.21020/husbfd.1106309

Abstract

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

Serebral Palsi Farkındalık Çalışması: Kayseri İli Örneği

Abstract

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.

Keywords

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

References

• Corrarino J. E. (2013). Health literacy and women's health: challenges and opportunities. Journal of Midwifery & Women's Health, 58(3), 257–264. https://doi.org/10.1111/jmwh.12018
• Duman, K. (2022). Cerebral Palsy: An Overview. Hamidiye Med J, 10(11), 12.
• Elangkovan, I. T., & Shorey, S. (2020). Experiences and Needs of Parents Caring for Children with Cerebral Palsy: A Systematic Review. Journal of Developmental and Behavioral Pediatrics : JDBP, 41(9), 730–739. https://doi.org/10.1097/DBP.0000000000000880
• Gilmore, L., & Wotherspoon, J. (2021). Perceptions of Cerebral Palsy in the Australian Community. International Journal of Disability, Development and Education, 1-17.
• Gómez-Marí, I., Sanz-Cervera, P., & Tárraga-Mínguez, R. (2021). Today Is My Day: Analysis of the Awareness Campaigns' Impact on Functional Diversity in the Press, on Google, and on Twitter. International Journal of Environmental Research and Public Health, 18(15), 7789. https://doi.org/10.3390/ijerph18157789
• Grammenos, S. (2020). European Comparative Data on Europe 2020 and Persons with Disabilities: Labour Market, Education, Poverty and Health Analysis and Trends. Publications Office of the European Union.
• Hayward, L., Fragala-Pinkham, M., Schneider, J., Coe, M., Vargas, C., Wassenar, A., ve diğerleri. (2021). Examination of the short-term impact of a disability awareness training on attitudes toward people with disabilities: A community-based participatory evaluation approach. Physiotherapy Theory and Practice, 37(2), 257-270.
• Hulley, S. B., Cummings, S. R., Browner, W. S., Grady, D., Newman, T. B. (2013). Designing clinical research: an epidemiologic approach. 4th ed. (Appendix 6E, page 81). Philadelphia, PA: Lippincott Williams & Wilkins.
• Jahan, I., Muhit, M., Hardianto, D., Laryea, F., Chhetri, A. B., Smithers-Sheedy, H., ve diğerleri. (2021). Epidemiology of cerebral palsy in low- and middle-income countries: preliminary findings from an international multi-centre cerebral palsy register. Developmental Medicine and Child Neurology, 63(11), 1327–1336. https://doi.org/10.1111/dmcn.14926
• Jarl, J., & Alriksson-Schmidt, A. (2021). School outcomes of adolescents with cerebral palsy in Sweden. Developmental Medicine and Child Neurology, 63(4), 429–435. https://doi.org/10.1111/dmcn.14769
• Jindal, P., MacDermid, J. C., Rosenbaum, P., DiRezze, B., & Narayan, A. (2018). Perspectives on rehabilitation of children with cerebral palsy: exploring a cross-cultural view of parents from India and Canada using the international classification of functioning, disability and health. Disability and Rehabilitation, 40(23), 2745–2755. https://doi.org/10.1080/09638288.2017.1356383
• Longo, E., Regalado, I., Galvão, E., Ferreira, H., Badia, M., & Baz, B. O. (2020). I Want to Play: Children With Cerebral Palsy Talk About Their Experiences on Barriers and Facilitators to Participation in Leisure Activities. Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association, 32(3), 190–200. https://doi.org/10.1097/PEP.0000000000000719.
• Magnusson, D. M., Cal, F., & Boissonnault, J. S. (2017). Influence of a Short-Term Disability Awareness Program on Knowledge and Attitudes of School-Aged Children in Southern Belize: Results of a Community-University Partnership. Physical Therapy, 97(4), 408–416. https://doi.org/10.2522/ptj.20160139
• Martin, H. L., Rowell, M. M., Reid, S. M., Marks, M. K., & Reddihough, D. S. (2005). Cerebral palsy: what do medical students know and believe?. Journal of Paediatrics and Child Health, 41(1‐2), 43-47. https://doi.org/10.1111/j.1440-1754.2005.00534.x
• Mei, C., Reilly, S., Reddihough, D., Mensah, F., Green, J., Pennington, L., ve diğerleri. (2015). Activities and participation of children with cerebral palsy: parent perspectives. Disability and Rehabilitation, 37(23), 2164–2173.
• Nawabi, F., Krebs, F., Vennedey, V., Shukri, A., Lorenz, L., & Stock, S. (2021). Health Literacy in Pregnant Women: A Systematic Review. International Journal of Environmental Research and Public Health, 18(7), 3847. https://doi.org/10.3390/ijerph18073847
• Patel, D. R., Neelakantan, M., Pandher, K., & Merrick, J. (2020). Cerebral palsy in children: a clinical overview. Translational Pediatrics, 9(Suppl 1), S125.
• Paul, S., Rafal, M., & Houtenville, A. (2020). 2020 Annual Disability Statistics Compendium. Institute on Disability, University of New Hampshire.
• Sadowska, M., Sarecka-Hujar, B., & Kopyta, I. (2020). Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment, 16, 1505.
• Serdaroğlu, A., Cansu, A., Ozkan, S., & Tezcan, S. (2006). Prevalence of cerebral palsy in Turkish children between the ages of 2 and 16 years. Developmental Medicine and Child Neurology, 48(6), 413–416. https://doi.org/10.1017/S0012162206000910
• T.C. Başbakanlık Devlet İstatistik Enstitüsü Başkanlığı. (2002). Türkiye Özürlüler Araştırması. Erişim Tarihi:12.04.2022 https://kutuphane.tuik.gov.tr/pdf/0014899.pdf
• Türkiye İstatistik Kurumu. (2019). Türkiye Sağlık Araştırması. Erişim Tarihi:12.04.2022 https://data.tuik.gov.tr/Bulten/Index?p=Turkiye-Saglik-Arastirmasi-2019-33661
• Wimalasundera, N., & Stevenson, V. L. (2016). Cerebral palsy. Practical Neurology, 16(3), 184–194. https://doi.org/10.1136/practneurol-2015-001184
• Woolfenden, S., Galea, C., Smithers‐Sheedy, H., Blair, E., Mcintyre, S., Reid, S., ve diğerleri. (2019). Impact of social disadvantage on cerebral palsy severity. Developmental Medicine & Child Neurology, 61(5), 586-592.
• World Health Organization. (2002). Towards a common language for functioning, disability and health: ICF. The International Classification of Functioning, Disability and Health. Geneva: World Health Organization. https://cdn.who.int/media/docs/default-source/classification/icf/icfbeginnersguide.pdf?sfvrsn=eead63d3_4&download=true
• World Health Organization. (2011). World report on disability 2011. World Health Organization. Erişim Tarihi:12.04.2022. https://apps.who.int/iris/handle/10665/44575