EVALUATION OF FAMILY IMPACT OF CHILDREN WITH CEREBRAL PALSY AND FAMILY CAREGIVER'S QUALITY OF LIFE, SLEEP QUALITY AND INDIVIDUAL PHYSICAL EDUCATION SATISFACTION: A MIXED STUDY

Abstract

Purpose: Cerebral Palsy (CP) is a disease that has significant effects on both the child and the family. The objective of this study is to examine the influence of the family, quality of life, sleep quality and individual physical education (IPE) of family caregivers of children with CP. In addition, it is planned to detail the factors affecting their satisfaction through semi-structured individual interviews. Methods: Family caregivers of 55 children diagnosed with CP between the ages of 1 and 15 were included in the study. Demographic information with “Demographic Information Survey”, the functional status of the child's with “Gross Motor Function Classification System (GMFCS)” the impact of the child on the family with “Impact on Family Scale (IoFS)”, caregiver's quality of life with “World Health Organization Quality of Life Scale - Short Form (WHOQOL-BREF) ”, caregiver's sleep quality was evaluated with “ Pittsburgh Sleep Quality Index (PSQI)” and the satisfaction with IPE was questioned with the “Pediatric Quality of Life Healthcare Parental Satisfaction Scale (PedsQL)”. Qualitative data were obtained through semi-structured individual interviews. Results: In our study, GMFCS level was negatively correlated with WHOQOL-BREF (p=0.028) and positively correlated with PSQI (p=0.002). In addition, the IoFS scale correlated negatively (p=0.000) with WHOQoL-BREF and positively (p=0.016) with PSQI. Conclusions: The findings of this study indicate that the physical dependence of the child has a negative impact on the quality of life and sleep quality of caregivers, and that the number of siblings affects parents' satisfaction with the treatment. It is recommended that further information be obtained regarding parents' perceptions of the disease and their individual physical education needs, as a result of semi-structured individual interviews.

Keywords

• cerebral palsy
• family
• personal satisfaction
• physical education
• quality of life

SEREBRAL PALSİLİ ÇOCUKLARIN AİLE ETKİLENİMİ VE AİLEDEKİ BAKIM VERENİN YAŞAM KALİTESİ, UYKU KALİTESİ VE BİREYSEL BEDEN EĞİTİM MEMNUNİYETİNİN DEĞERLENDİRİLMESİ: KARMA ÇALIŞMA

Abstract

Amaç: Serebral Palsi (SP), hem çocuk hem de aile üzerinde önemli etkileri olan bir hastalıktır. Bu çalışmanın amacı, SP’li çocukların aile etkilenimini ve ailedeki bakım verenin yaşam kalitesini, uyku kalitesini ve bireysel beden eğitiminden (IPE) memnuniyetini incelemektir. Ayrıca yarı yapılandırılmış bireysel görüşmelerle de memnuniyetini etkileyen faktörlerin detaylandırılması planlanmıştır. Yöntem: Çalışmaya 1-15 yaş aralığında CP tanısı almış 55 çocuğun ebeveyni dahil edilmiştir. Demografik bilgiler “Demografik Bilgiler Anketi” ile, çocuğun fonsiyonel durumu “Kaba Motor Fonksiyon Sınıflandırma Sistemi (KMFSS)” ile, çocuğun aile üzerindeki etkisi “Aile Etki Ölçeği (AEÖ)” ile, bakım verenin yaşam kalitesi “Dünya Sağlık Örgütü Yaşam Kalite Ölçeği – Kısa Form (DSÖYKÖ-KF)” ile, bakım verenin uyku kalitesi “Pittsburgh Uyku Kalitesi İndeksi (PUKİ)” ile ve bakım verenin çocuğunun aldığı bireysel bedensel eğitimden memnuniyeti “Pediatrik Yaşam Kalitesi Sağlık Bakımı Ebeveyn Memnuniyet Ölçeği (PYKSBEMÖ)” ile değerlendirilmiştir. Nitel veriler ise, yarı yapılandırılmış bireysel görüşmeler ile sağlanmıştır. Sonuçlar: Çalışmamızda KMFSS seviyesinin DSÖYKÖ-KF ile negatif (p=0,028), PUKİ ile pozitif (p=0,002) korelasyon gösterdiği bulunmuştur. Ayrıca AEÖ ölçeği DSÖYKÖ-KF ile negatif (p=0,000), PUKİ ile pozitif (p=0,016) korelasyon göstermektedir. Tartışma: Bu çalışmanın bulguları, çocuğun fiziksel bağımlılığının ebeveynlerin yaşam kalitesi ve uyku kalitesi üzerinde olumsuz bir etkiye sahip olduğunu ve kardeş sayısının ebeveynlerin tedaviden memnuniyetini etkilediğini göstermektedir. Yarı yapılandırılmış bireysel görüşmeler sonucunda ebeveynlerin hastalık algıları ve bireysel beden eğitimi ihtiyaçları hakkında daha fazla bilgi edinilmesi önerilmektedir.

Keywords

• Serebral palsi
• Aile
• Kişisel memnuniyet
• Bedensel eğitim
• Yaşam kalitesi

References

1. Graham HK, Rosenbaum P, Paneth N, Dan B, Lin JP, Damiano DiL, et al. Cerebral palsy. Nat Rev Dis Prim. 2016;7(2):15082.
2. Smith M, Blamires J. Mothers’ experience of having a child with cerebral palsy. A systematic review. J Pediatr Nurs. 2022 May 1;64:64–73.
3. Serdaroǧlu A, Cansu A, Özkan S, Tezcan S. Prevalence of cerebral palsy in Turkish children between the ages of 2 and 16 years. Dev Med Child Neurol. 2006;48(6):413–6.
4. Dlamini MD, Chang YJ, Nguyen TTB. Caregivers’ experiences of having a child with cerebral palsy. A meta-synthesis. J Pediatr Nurs [Internet]. 2023;73(August):157–68. Available from: https://doi.org/10.1016/j.pedn.2023.08.026
5. Park E-Y. Validity and reliability of the caregiving difficulty scale in mothers of children with cerebral palsy. Int J Environ Res Public Health. 2021;18(11):5689.
6. Bastami L, Jahantabi-nejad S, Ghasemzadeh R, Akbari M, Dastoorpour M. Research Article Investigating the Predictive Factors of Life Balance in Mothers of Children with Cerebral Palsy. J Mod Rehabil. 2024;18(1):76–83.
7. Testani DA, Hatherly K, Csercsics A, Pajak S. Caregiver Stress and Impact on Children with Cerebral Palsy : A Systematic Review. Authorea. 2024;1–9.
8. Millî Eğitim Bakanlığı. Bedensel Yetersizliği Olan Bireyler İçin Destek Eğitim Programı [Internet]. 2024. Available from: https://ookgm.meb.gov.tr/meb_iys_dosyalar/2021_07/09102952_21130008_Bedensel.pdf

9. Cetintas I, Kostak Akgun M, Semerci R, Kocaaslan EN. The Relationship Between Parents ’ Perceptions of Family-Centered Care and Their Health Care Satisfaction. Eurasian J Fam Med. 2021;10(3):125–34.
10. Mohamed RA, Kamal HM, Gharib RM. Exploration of Parental Satisfaction with Physical Therapy Services in Pediatrics Out-Patient Clinics. Egypt J Hosp Med. 2022;89(1):5386–91.
11. Michael-Asalu A, Taylor G, Campbell H, Lelea LL, Kirby RS. Cerebral Palsy: Diagnosis, Epidemiology, Genetics, and Clinical Update. Adv Pediatr [Internet]. 2019;66:189–208. Available from: https://doi.org/10.1016/j.yapd.2019.04.002
12. Paulson A, Vargus-Adams J. Overview of four functional classification systems commonly used in cerebral palsy. Child. 2017;4(4).
13. Palisano R, Rosenbaum P, Bartlett D, Livingston M. GMFCS. Handb Dis Burdens Qual Life Meas. 2007;4217–4217.
14. Stein RE, Riessman CK. The development of an impact-on-family scale: preliminary findings. Med Care. 1980;18(4):465–72.
15. Bek N, Engin IE, Erel S, Yakut Y, Uygur F. Turkish version of impact on family scale: A study of reliability and validity. Health Qual Life Outcomes. 2009;7(1):1–7.
16. Beydemir F. The Impact on Family Scale’ın (Aile Etki Ölçeği) Türkçe’ye uyarlanması, geçerlilik ve güvenilirliği. Pamukkale Üniversitesi Sağlık Bilimleri Enstitüsü Fizik Tedavi ve Rehabilitasyon Anabilim Dalı. 2008.
17. Aigner M, Förster-Streffleur S, Prause W, Freidl M, Weiss M, Bach M. What does the WHOQOL-Bref measure? Measurement overlap between quality of life and depressive symptomatology in chronic somatoform pain disorder. Soc Psychiatry Psychiatr Epidemiol. 2006;41(1):81–6.
18. Eser E, Fidaner H, Fidaner C, Eser SY, Elbi H, Göker E. WHOQOL-100 ve WHOQOL-BREF’in psikometrik özellikleri. Psikiyatr Psikol Psikofarmakol Derg. 1999;7((Ek 2)):23–40.
19. Kizhakkethara V, Chathoth Meethal A. Self-Efficacy and Quality of Life of Mothers of Children with Cerebral Palsy: The Effect of Multi Intervention Package. J Psychosoc Rehabil Ment Heal [Internet]. 2022;9(3):275–82. Available from: https://doi.org/10.1007/s40737-022-00264-w
20. Lang CP, Boucaut A, Guppy M, Johnston LM. Children with cerebral palsy: A cross-sectional study of their sleep and their caregiver’s sleep quality, psychological health and well-being. Child Care Health Dev. 2021;47(6):859–68.
21. Ağargün MY, Kara H, Anlar Ö. Pittsburgh uyku kalitesi indeksinin geçerliği ve güvenirliği. Türk Psikiyatr Derg. 1996;7.2:107–15.
22. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations. Med Care. 2001;39(8):800–12.
23. Ulus B, Kublay G. PedsQL sağlık bakımı ebeveyn memnuniyet ölçeğinin Türkçe’ye uyarlanması. Acıbadem Üniversitesi Sağlık Bilim Derg. 2012;3(1):44–50.
24. Cetintas I, Kostak MA, Semerci R, Kocaaslan EN. The relationship between parents’ perceptions of family-centered care and their health care satisfaction. Eurasian J Fam Med. 2021;10(3):125–34.
25. Balandin S, Hemsley B, Sigafoos J, Green V. Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs. Appl Nurs Res. 2007;20(2):56–62.
26. Çay E. Ağır ve Çoklu Yetersizliğe Sahip Çocuğu Olan Ebeveynlerin Evde Eğitime ve Çocuklarına Yönelik Gereksinimlerinin Belirlenmesi. Yaşadıkça Eğitim. 2024;38(1):120–33.
27. Kalaycı Ş. SPSS Uygulamalı Çok Değişkenli İstatistik Teknikleri. 9th ed. Ankara: Asil Yayın Dağıtım Ltd. Şti.; 2018. 426 p.
28. Yıldırım A, Şimşek H. Sosyal bilimlerde nitel araştırma yöntemleri. Seçkin Yayıncılık [Internet]. 2016;10. Available from: http://eku.comu.edu.tr/article/view/1044000129
29. Miles MB, Huberman AM. Qualitative data analysis: An expanded Sourcebook. Vol. 2, Sage. 1994.
30. Albayrak I, Biber A, Çalışkan A, Levendoglu F. Assessment of pain, care burden, depression level, sleep quality, fatigue and quality of life in the mothers of children with cerebral palsy. J Child Heal Care. 2019;23(3):483–94.
31. Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Indicators of distress in families of children with cerebral palsy. Disabil Rehabil. 2012;34(14):1202–7.
32. Glinac A, Matović L, Delalić A, Mešalić L. Quality of life in mothers of children with cerebral palsy. Acta Clin Croat. 2017;56(2):299–307.
33. Sonune SP, Gaur AK, Shenoy A. Prevalence of depression and quality of life in primary caregiver of children with cerebral palsy. J Fam Med Prim Care [Internet]. 2021;10:4205–11. Available from: http://www.jfmpc.com/article.asp?issn=2249-4863;year=2017;volume=6;issue=1;spage=169;epage=170;aulast=Faizi
34. Lee MH, Matthews AK, Park C. Determinants of Health-related Quality of Life Among Mothers of Children With Cerebral Palsy. J Pediatr Nurs [Internet]. 2019;44:1–8. Available from: https://doi.org/10.1016/j.pedn.2018.10.001
35. Lee MH, Matthews AK, Park CG, Vincent C, Hsieh K, Savage TA. Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy. Res Nurs Heal. 2020;43(6):590–601.
36. Farajzadeh A, Maroufizadeh S, Amini M. Factors associated with quality of life among mothers of children with cerebral palsy. Int J Nurs Pract. 2020;26:1–9.
37. Petersen S, Francis KL, Reddihough DS, Lima S, Harvey A, Newall F. Sleep problems and solution seeking for children with cerebral palsy and their parents. J Paediatr Child Health. 2020;56:1108–13.
38. Hulst RY, Gorter JW, Voorman JM, Kolk E, Van Der Vossen S, Visser-Meily JMA, et al. Sleep problems in children with cerebral palsy and their parents. Dev Med Child Neurol. 2021;63(11):1344–50.
39. Cimke S, Mucuk S. Mothers’ Participation in the Hospitalized Children’s Care and their Satisfaction. Int J Caring Sci. 2017;10(3):1643.
40. Mwinbam MM, Suglo JN, Agyeman YN, Kukeba MW. Family caregivers’ experience of care with a child with cerebral palsy: The lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatr Open. 2023;7(1):1–10.