Zihinsel ve Bedensel Engelli Çocuklar ile Sağlıklı Kardeşlerinin Yaşam Kalitelerinin Karşılaştırılması

Year 2024, , 123 - 128, 12.09.2024

Erdoğan Kavlak , Server Erdoğmuş Ebru Kavlak Gülay Yalçın

https://doi.org/10.30720/ered.1440041

Abstract

Amaç: Nörolojik sorunu olan çocukların sağlıkla ilgili yaşam kalitelerinin olumsuz etkilendiği bilinmektedir. Ancak bu sorunlar aynı zamanda tüm aileyi de olumsuz etkilemektedir. Bu çalışma, zihinsel ve bedensel engelli çocuklar ile sağlıklı kardeşlerinin yaşam kalitesini incelemek amacıyla yapılmıştır. Gereç ve Yöntem: Çalışmaya 2-18 yaş arası zihinsel ve bedensel engelli 82 çocuk ve onların sağlıklı kardeşleri dahil edildi. Katılımcıların sosyodemografik verileri kaydedildi. Sağlıkla ilişkili yaşam kalitesini ölçmek için Pediatrik Yaşam Kalitesi Envanteri, engelli çocukların kaba motor fonksiyonlarını değerlendirmek için Kaba Motor Fonksiyon Sınıflandırma Sistemi kullanıldı. Sonuçlar: Araştırmaya yaş ortalaması 9,87±5,06 yıl olan 82 (48 erkek, 34 kız) zihinsel ve bedensel engelli çocuk ve yaş ortalaması 12,68±3,65 olan 82 (34 erkek, 48 kız) sağlıklı kardeş dahil edildi. Zihinsel ve bedensel engelli çocukların yaşam kalitesi incelendiğinde iki grup arasında anlamlı bir fark olmadığı görüldü (p>0,05). Zihinsel ve bedensel engelli çocukların sağlıklı kardeşlerinin de yaşam kaliteleri arasında anlamlı bir fark yoktu (p>0,05). Tartışma: Zihinsel ve bedensel engelli çocuklar gibi sağlıklı kardeşlerin yaşam kalitesinin de benzer şekilde etkilendiği gözlendi. Engelli çocukların tedavi sürecinde ailelerinin ve sağlıklı kardeşlerinin yaşam kalitesinin de olumsuz etkileneceği unutulmamalıdır.

Keywords

zihinsel, fiziksel, kardeş, yaşam kalitesi

Ethical Statement

Declarations Section Ethics Approval and Consent to Participate Ethics approval All methods were performed in accordance with the ethical standards of the institutional and/or national research committee and the Declaration of Helsinki. Ethics committee approval was approved by Pamukkale University Non-Interventional Clinical Research Medical Ethics Committee with the decision dated 03.03.2020 and numbered 05. Ethics and consent to participate Written informed consent was obtained from the participant included in the study. Funding None, this study was not funded by any institution or organization Conflict of interest All authors who contributed to the study declare that there is no conflict of interest regarding the article and that they did not receive financial support. Authors’ Contribution Erdoğan Kavlak, Design, Analysis, Manuscript writing, Control, Server Erdoğmuş, Data collection, Article writing, Literature review, Ebru Kavlak, Data collection, Article Writing, literature review, Gülay Yalçın, Data collection, Article Writing

Supporting Institution

YOK

Thanks

The authors thank all participants who participated in the study for their contribution

Comparison of the Quality of Life of Mentally and Physically Disabled Children and Their Healthy Siblings

Abstract

Purpose: It is known that the health-related quality of life of children with neurological problems is adversely affected. But these problems also have a negative impact on the whole family. This study was conducted to examine the quality of life of children with mental and physical disabilities and their healthy siblings. Material and Methods: 82 children with mental and physical disabilities between the ages of 2-18 and their healthy siblings were included in the study. The sociodemographic data of the participants were recorded. The Pediatric Quality of Life Inventory was used to measure health-related quality of life, and the Gross Motor Function Classification System was used to evaluate the gross motor functions of children with disabilities. Results: 82 (48 boys, 34 girls) mentally and physically disabled children with a mean age of 9.87±5.06 years and 82 (34 boys, 48 girls) healthy siblings with a mean age of 12.68±3.65 were included in the study. When the quality of life of mentally and physically disabled children was examined, it was seen that there was no significant difference between the two groups (p>0.05). There was no significant difference between the quality of life of the healthy siblings of mentally and physically disabled children (p>0.05). Discussion: It was observed that the quality of life of healthy siblings of mentally and physically disabled children was similarly affected. It should not be forgotten that the quality of life of their families and healthy siblings will also be adversely affected during the treatment process of disabled children.

Keywords

mental, physical, siblings, life quality

References

• Alderfer, M. A., Long, K. A., Lown, E. A., Marsland, A. L., Ostrowski, N. L., & Hock, J. M. (2010). Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology, 19(8), 789–805. doi: 10.1002/pon.1638.
• Ali, M.M., & Sarullah, S. (2010). Typical Siblings’ acceptance of siblings with special needs. Procedia Soc. Behav. Sci. 9, 517-521. doi:10.1016/j.sbspro.2010.12.190.
• Arıkan, Z., Mutlu, A., & Livanelioğlu, A. (2020). Farklı fonksiyonel seviyedeki serebral palsili çocuklarda omurga düzgünlüğü ve kas iskelet sistemi etkileniminin değerlendirilmesi. Turk J Physiother Rehabil, 31(2), 171-179. https://doi.org/10.21653/tjpr.517950
• Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child Care Health Dev, 32(1), 19–31. doi: 10.1111/j.1365-2214.2006.00591.x.
• Bellin, M. H., & Kovacs, P. (2006). Fostering resilience in siblings of youths with a chronic health condition: a review of the literature. Health Soc Work, 31(3), 209–216. doi: 10.1093/hsw/31.3.209.
• Çakın-Memik, N., Ağaoğlu, B., Coşkun, A., Üneri, Ö.Ş. ve Karakaya, I. (2007). Çocuklar İçin Yaşam Kalitesi Ölçeğinin 13-18 yaş ergen formunun geçerlik ve güvenilirliği. Turk Psikiyatri Derg, 18(4), 353-363.
• Dinleyici, M., & Dagli, F. S. (2018). Kronik hastaligi olan cocuklarin saglikli kardeslerinde yasam kalitesi degerlendirilmesi. Turk Pediatri Ars, 53(4), 205-13. doi: 10.5152/TurkPediatriArs.2018.6778.
• Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. J Intellect Disabil Res, 50(12), 937–948. doi: 10.1111/j.1365-2788.2006.00928.x.
• Hall, S. A., & Rossetti, Z. (2018). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. J Appl Res Intellect Disabil, JARID, 31(3), 423–434. doi: 10.1111/jar.12421. Epub 2017 Oct 24.
• Juneja, M., Jain, R., Singhal, S., & Mishra, D. (2012). Availing services for developmental disabilities: parental experiences from a referral center in developing country. Indian J Pediatr, 79(9), 1213–1217. doi: 10.1007/s12098-011-0653-0. Epub 2011 Dec 17.
• Knecht, C., Hellmers, C., & Metzing, S. (2015). The perspective of siblings of children with chronic illness: a literature review. J Pediatr Nur, 30(1), 102–116. doi: 10.1016/j.pedn.2014.10.010.
• Malhi, P., & Singhi, P. (2005). Correlates of quality of life with epilepsy. Indian J Pediatr, 72(2), 131–135. doi: 10.1007/BF02760697.
• Öztürk, C., & Ayar, D. (2013). Tip 1 Diabetes Mellitus’lu çocuklarda yaşam kalitesi ve önemi. Dokuz Eylül Üniversitesi Hemşirelik Fakültesi Elektronik Dergisi, 6(2), 99-101.
• Rana, P., & Mishra, D. (2015). Quality of life of unaffected siblings of children with chronic neurological disorders. Indian j pediatr, 82(6), 545–548. doi: 10.1007/s12098-014-1672-4. Epub 2015 Feb 3.
• Read, J., Kinali, M., Muntoni, F., Weaver, T., & Garralda, M. E. (2011). Siblings of young people with Duchenne Muscular Dystrophy--a qualitative study of impact and coping. Eur J Paediatr Neurol, 15(1), 21–28. doi: 10.1016/j.ejpn.2010.07.006. Epub 2010 Aug 21.
• Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol, 27(8), 699–710. doi: 10.1093/jpepsy/27.8.699.
• Stoneman Z. (2005). Siblings of children with disabilities: research themes. Ment Retard, 43(5), 339–350. doi: 10.1352/0047-6765(2005)43[339:SOCWDR]2.0.CO;2.
• Taylor, Fuggle, P., & Charman, T. (2001). Well sibling psychological adjustment to chronic physical disorder in a sibling: how important is maternal awareness of their illness attitudes and perceptions?. J Child Psychol Psychiatry, 42(7), 953–962. doi: 10.1111/1469-7610.00791.
• Vermaes, I. P., van Susante, A. M., & van Bakel, H. J. (2012). Psychological functioning of siblings in families of children with chronic health conditions: a meta-analysis. J Pediatr Psychol, 37(2), 166–184. doi: 10.1093/jpepsy/jsr081. Epub 2011 Oct 12. Wolfe, B., Song, J., Greenberg, J. S., & Mailick, M. R. (2014). Ripple effects of developmental disabilities and mental illness on nondisabled adult siblings. Soc Sci Med, 108, 1–9. doi: 10.1016/j.socscimed.2014.01.021. Epub 2014 Jan 25. World Health Organization. (2006). The world health report : 2006 : working together for health. Erişim adresi: https://iris.who.int/.