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Serebral Palside Dil ve Konuşma Bozukluklarına Yönelik Farkındalık Çalışması

Year 2023, Volume: 12 Issue: 2, 152 - 161, 14.12.2023
https://doi.org/10.46971/ausbid.1372872

Abstract

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.

Ethical Statement

Permission was obtained from the Üsküdar University Non-Interventional Research Ethics Committee for the research (04/07/2023, Decision No. 61351342).

References

  • Alruwaished, A., Ali, B., Alhowaimil, L., Alhowaimil, A., Alhowaimil, A. A., & Alessa, A. (2020). Knowledge and attitude of caregivers of cerebral palsy children in Riyadh city. International Journal of Medicine in Developing Countries, 4(1), 12-17. https://doi.org/10.24911/IJMDC.51-1547833051
  • Arora, S. K., Aggarwal, A., & Mittal, H. (2014). Impact of an educational film on parental knowledge of children with cerebral palsy. International Journal of Pediatrics, 2014, 573698. https://doi.org/10.1155/2014/573698
  • Cans C. (2000). Surveillance of cerebral palsy in Europe: A collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Developmental Medicine and Child Neurology, 42(12), 816–824. https://doi.org/10.1017/s0012162200001511
  • Dambi, J. M., Mandizvidza, C., Chiwaridzo, M., Nhunzvi, C., & Tadyanemhandu, C. (2016). Does an educational workshop have an impact on caregivers' levels of knowledge about cerebral palsy? A comparative, descriptive cross-sectional survey of Zimbabwean caregivers. Malawi Medical Journal: The Journal of Medical Association of Malawi, 28(4), 167–173. https://doi.org/10.4314/mmj.v28i4.4
  • Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., McManus, V., Michelsen, S. I., Parkes, J., & Colver, A. F. (2007). Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. Lancet (London, England), 369(9580), 2171–2178. https://doi.org/10.1016/S0140-6736(07)61013-7
  • 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
  • Garne, E., Dolk, H., Krägeloh-Mann, I., Holst Ravn, S., Cans, C., & SCPE Collaborative Group (2008). Cerebral palsy and congenital malformations. European Journal of Paediatric Neurology: EJPN: official journal of the European Paediatric Neurology Society, 12(2), 82–88. https://doi.org/10.1016/j.ejpn.2007.07.001
  • Gilmore, L., & Wotherspoon, J. (2023). Perceptions of cerebral palsy in the Australian community. International Journal of Disability, Development and Education, 70(4), 413-429. https://doi.org/10.1080/1034912X.2021.1882664
  • Gulati, S., & Sondhi, V. (2018). Cerebral Palsy: An Overview. Indian Journal of Pediatrics, 85(11), 1006–1016. https://doi.org/10.1007/s12098-017-2475-1
  • Hayward, L., Fragala-Pinkham, M., Schneider, J., Coe, M., Vargas, C., Wassenar, A., Emmons, M., Lizzio, C., Hayward, J., & Torres, D. (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. https://doi.org/10.1080/09593985.2019.1630879
  • Himmelmann, K., Hagberg, G., & Uvebrant, P. (2010). The changing panorama of cerebral palsy in Sweden. X. Prevalence and origin in the birth‐year period 1999–2002. Acta Paediatrica, 99(9), 1337-1343. https://doi.org/10.1111/j.1651-2227.2010.01819.x
  • Himpens, E., Van den Broeck, C., Oostra, A., Calders, P., & Vanhaesebrouck, P. M. D. P. (2008). Prevalence, type, distribution, and severity of cerebral palsy in relation to gestational age: A meta‐analytic review. Developmental Medicine & Child Neurology, 50(5), 334-340. https://doi.org/10.1111/j.1469-8749.2008.02047.x
  • Imms, C., Reilly, S., Carlin, J., & Dodd, K. (2008). Diversity of participation in children with cerebral palsy. Developmental Medicine and Child Neurology, 50(5), 363–369. https://doi.org/10.1111/j.1469-8749.2008.02051.x
  • Johnson, A. (2002). Prevalence and characteristics of children with cerebral palsy in Europe. Developmental Medicine and Child Neurology, 44(9), 633–640. https://doi.org/10.1017/S0012162201002675
  • Jones, M. W., Morgan, E., Shelton, J. E., & Thorogood, C. (2007). Cerebral palsy: Introduction and diagnosis (part I). Journal of Pediatric Health Care: Official publication of National Association of Pediatric Nurse Associates & Practitioners, 21(3), 146–152. https://doi.org/10.1016/j.pedhc.2006.06.007
  • Maher, C. A., Williams, M. T., Olds, T., & Lane, A. E. (2007). Physical and sedentary activity in adolescents with cerebral palsy. Developmental Medicine and Child Neurology, 49(6), 450–457. https://doi.org/10.1111/j.1469-8749.2007.00450.x
  • Majnemer, A., Shevell, M., Law, M., Birnbaum, R., Chilingaryan, G., Rosenbaum, P., & Poulin, C. (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine and Child Neurology, 50(10), 751–758. https://doi.org/10.1111/j.1469-8749.2008.03068.x
  • 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., & Morgan, A. T. (2015). Activities and participation of children with cerebral palsy: parent perspectives. Disability and Rehabilitation, 37(23), 2164–2173. https://doi.org/10.3109/09638288.2014.999164
  • Michelsen, S. I., Flachs, E. M., Uldall, P., Eriksen, E. L., McManus, V., Parkes, J., Parkinson, K. N., Thyen, U., Arnaud, C., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M., & Colver, A. (2009). Frequency of participation of 8-12-year-old children with cerebral palsy: a multi-centre cross-sectional European study. European Journal of Paediatric Neurology: EJPN: Official Journal of the European Paediatric Neurology Society, 13(2), 165–177. https://doi.org/10.1016/j.ejpn.2008.03.005
  • Patel, D. R., Neelakantan, M., Pandher, K., & Merrick, J. (2020). Cerebral palsy in children: A clinical overview. Translational Pediatrics, 9(Suppl 1), S125–S135. https://doi.org/10.21037/tp.2020.01.01
  • Pennington, L., Goldbart, J., & Marshall, J. (2005). Direct speech and language therapy for children with cerebral palsy: Findings from a systematic review. Developmental Medicine and Child Neurology, 47(1), 57–63. https://doi.org/10.1017/s0012162205000101
  • Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., Dan, B., & Jacobsson, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology. Supplement, 109, 8–14.
  • 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, 1505–1518. https://doi.org/10.2147/NDT.S235165
  • 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
  • Stanley, F. J., & Watson, L. (1992). Trends in perinatal mortality and cerebral palsy in Western Australia, 1967 to 1985. British Medical Journal, 304(6843), 1658–1663. https://doi.org/10.1136/bmj.304.6843.1658
  • Varol, B. K., & Menevşe, Ö. (2022). Serebral palsi farkındalık çalışması: Kayseri ili örneği. Hacettepe University Faculty of Health Sciences Journal, 9(3), 781-795. https://doi.org/10.21020/husbfd.1106309
  • Wood, E. (2006, December). The child with cerebral palsy: Diagnosis and beyond. Seminars in Pediatric Neurology, 13(4), 286-296. https://doi.org/10.1016/j.spen.2006.09.009
  • World Health Organization. (2011). World report on disability 2011. World Health Organization. [cited 2023 September 27]. Available at: https://apps.who.int/iris/handle/10665/44575 World Health Organization. (2015). WHO global disability action plan 2014-2021: Better health for all people with disability. World Health Organization. https://www.who.int/publications/i/item/who-global-disability-action-plan-2014-2021

Awareness Study on Speech and Language Disorders in Cerebral Palsy

Year 2023, Volume: 12 Issue: 2, 152 - 161, 14.12.2023
https://doi.org/10.46971/ausbid.1372872

Abstract

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.

References

  • Alruwaished, A., Ali, B., Alhowaimil, L., Alhowaimil, A., Alhowaimil, A. A., & Alessa, A. (2020). Knowledge and attitude of caregivers of cerebral palsy children in Riyadh city. International Journal of Medicine in Developing Countries, 4(1), 12-17. https://doi.org/10.24911/IJMDC.51-1547833051
  • Arora, S. K., Aggarwal, A., & Mittal, H. (2014). Impact of an educational film on parental knowledge of children with cerebral palsy. International Journal of Pediatrics, 2014, 573698. https://doi.org/10.1155/2014/573698
  • Cans C. (2000). Surveillance of cerebral palsy in Europe: A collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Developmental Medicine and Child Neurology, 42(12), 816–824. https://doi.org/10.1017/s0012162200001511
  • Dambi, J. M., Mandizvidza, C., Chiwaridzo, M., Nhunzvi, C., & Tadyanemhandu, C. (2016). Does an educational workshop have an impact on caregivers' levels of knowledge about cerebral palsy? A comparative, descriptive cross-sectional survey of Zimbabwean caregivers. Malawi Medical Journal: The Journal of Medical Association of Malawi, 28(4), 167–173. https://doi.org/10.4314/mmj.v28i4.4
  • Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., McManus, V., Michelsen, S. I., Parkes, J., & Colver, A. F. (2007). Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. Lancet (London, England), 369(9580), 2171–2178. https://doi.org/10.1016/S0140-6736(07)61013-7
  • 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
  • Garne, E., Dolk, H., Krägeloh-Mann, I., Holst Ravn, S., Cans, C., & SCPE Collaborative Group (2008). Cerebral palsy and congenital malformations. European Journal of Paediatric Neurology: EJPN: official journal of the European Paediatric Neurology Society, 12(2), 82–88. https://doi.org/10.1016/j.ejpn.2007.07.001
  • Gilmore, L., & Wotherspoon, J. (2023). Perceptions of cerebral palsy in the Australian community. International Journal of Disability, Development and Education, 70(4), 413-429. https://doi.org/10.1080/1034912X.2021.1882664
  • Gulati, S., & Sondhi, V. (2018). Cerebral Palsy: An Overview. Indian Journal of Pediatrics, 85(11), 1006–1016. https://doi.org/10.1007/s12098-017-2475-1
  • Hayward, L., Fragala-Pinkham, M., Schneider, J., Coe, M., Vargas, C., Wassenar, A., Emmons, M., Lizzio, C., Hayward, J., & Torres, D. (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. https://doi.org/10.1080/09593985.2019.1630879
  • Himmelmann, K., Hagberg, G., & Uvebrant, P. (2010). The changing panorama of cerebral palsy in Sweden. X. Prevalence and origin in the birth‐year period 1999–2002. Acta Paediatrica, 99(9), 1337-1343. https://doi.org/10.1111/j.1651-2227.2010.01819.x
  • Himpens, E., Van den Broeck, C., Oostra, A., Calders, P., & Vanhaesebrouck, P. M. D. P. (2008). Prevalence, type, distribution, and severity of cerebral palsy in relation to gestational age: A meta‐analytic review. Developmental Medicine & Child Neurology, 50(5), 334-340. https://doi.org/10.1111/j.1469-8749.2008.02047.x
  • Imms, C., Reilly, S., Carlin, J., & Dodd, K. (2008). Diversity of participation in children with cerebral palsy. Developmental Medicine and Child Neurology, 50(5), 363–369. https://doi.org/10.1111/j.1469-8749.2008.02051.x
  • Johnson, A. (2002). Prevalence and characteristics of children with cerebral palsy in Europe. Developmental Medicine and Child Neurology, 44(9), 633–640. https://doi.org/10.1017/S0012162201002675
  • Jones, M. W., Morgan, E., Shelton, J. E., & Thorogood, C. (2007). Cerebral palsy: Introduction and diagnosis (part I). Journal of Pediatric Health Care: Official publication of National Association of Pediatric Nurse Associates & Practitioners, 21(3), 146–152. https://doi.org/10.1016/j.pedhc.2006.06.007
  • Maher, C. A., Williams, M. T., Olds, T., & Lane, A. E. (2007). Physical and sedentary activity in adolescents with cerebral palsy. Developmental Medicine and Child Neurology, 49(6), 450–457. https://doi.org/10.1111/j.1469-8749.2007.00450.x
  • Majnemer, A., Shevell, M., Law, M., Birnbaum, R., Chilingaryan, G., Rosenbaum, P., & Poulin, C. (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine and Child Neurology, 50(10), 751–758. https://doi.org/10.1111/j.1469-8749.2008.03068.x
  • 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., & Morgan, A. T. (2015). Activities and participation of children with cerebral palsy: parent perspectives. Disability and Rehabilitation, 37(23), 2164–2173. https://doi.org/10.3109/09638288.2014.999164
  • Michelsen, S. I., Flachs, E. M., Uldall, P., Eriksen, E. L., McManus, V., Parkes, J., Parkinson, K. N., Thyen, U., Arnaud, C., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M., & Colver, A. (2009). Frequency of participation of 8-12-year-old children with cerebral palsy: a multi-centre cross-sectional European study. European Journal of Paediatric Neurology: EJPN: Official Journal of the European Paediatric Neurology Society, 13(2), 165–177. https://doi.org/10.1016/j.ejpn.2008.03.005
  • Patel, D. R., Neelakantan, M., Pandher, K., & Merrick, J. (2020). Cerebral palsy in children: A clinical overview. Translational Pediatrics, 9(Suppl 1), S125–S135. https://doi.org/10.21037/tp.2020.01.01
  • Pennington, L., Goldbart, J., & Marshall, J. (2005). Direct speech and language therapy for children with cerebral palsy: Findings from a systematic review. Developmental Medicine and Child Neurology, 47(1), 57–63. https://doi.org/10.1017/s0012162205000101
  • Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., Dan, B., & Jacobsson, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology. Supplement, 109, 8–14.
  • 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, 1505–1518. https://doi.org/10.2147/NDT.S235165
  • 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
  • Stanley, F. J., & Watson, L. (1992). Trends in perinatal mortality and cerebral palsy in Western Australia, 1967 to 1985. British Medical Journal, 304(6843), 1658–1663. https://doi.org/10.1136/bmj.304.6843.1658
  • Varol, B. K., & Menevşe, Ö. (2022). Serebral palsi farkındalık çalışması: Kayseri ili örneği. Hacettepe University Faculty of Health Sciences Journal, 9(3), 781-795. https://doi.org/10.21020/husbfd.1106309
  • Wood, E. (2006, December). The child with cerebral palsy: Diagnosis and beyond. Seminars in Pediatric Neurology, 13(4), 286-296. https://doi.org/10.1016/j.spen.2006.09.009
  • World Health Organization. (2011). World report on disability 2011. World Health Organization. [cited 2023 September 27]. Available at: https://apps.who.int/iris/handle/10665/44575 World Health Organization. (2015). WHO global disability action plan 2014-2021: Better health for all people with disability. World Health Organization. https://www.who.int/publications/i/item/who-global-disability-action-plan-2014-2021
There are 29 citations in total.

Details

Primary Language English
Subjects Allied Health and Rehabilitation Science (Other)
Journal Section Research Articles
Authors

Mümüne Merve Parlak 0000-0002-1603-2360

Cansu Yıldırım 0000-0001-7966-7067

Merve Sapmaz Atalar 0000-0003-2556-1026

Early Pub Date December 3, 2023
Publication Date December 14, 2023
Published in Issue Year 2023 Volume: 12 Issue: 2

Cite

APA Parlak, M. M., Yıldırım, C., & Sapmaz Atalar, M. (2023). Awareness Study on Speech and Language Disorders in Cerebral Palsy. Ankara Sağlık Bilimleri Dergisi, 12(2), 152-161. https://doi.org/10.46971/ausbid.1372872