The effects of the functional levels of children with cerebral palsy on the quality of life of caregivers

Abstract

Background/Aim: Psychological status and quality of life of caregivers with children with cerebral palsy are lower than the population. The functional status of the child is one of the factors affecting the caregiver's quality of life. However, the relationship between gross motor and hand functions, communication, oromotor skills, oropharyngeal functions and the caregiver's quality of life remains unclear. The aim of the study is to examine the effects of the functional levels of children with cerebral palsy on the quality of life of their caregivers. Methods: Two hundred and seventeen children with cerebral palsy and their caregivers were included in this cross-sectional study. Inclusion criteria were; (i) Children aged 0-18, diagnosed with cerebral palsy (CP), followed in the pediatric rehabilitation outpatient clinic of the university, (ii) individuals who care for children with CP and volunteer to participate in the study, (iii) individuals who have a literacy level of understanding the purpose of the study and the forms to be filled in. Children's demographic information (age, gender), cerebral palsy types were recorded and detailed functional evaluation was made. The identity of the caregiver was recorded and quality of life was evaluated with the Short Form-12 (SF-12). Functional classification of the children were evaluated with Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication Function Classification System (CFCS) and Eating and Drinking Ability Classification System (EDACS). The relationship between the child's functional level in each scale and the caregiver's SF-12 score was investigated. Results: Of the 117 children with a mean age of 7.62 (4.08), 52.5% were male (n=114) and 47.5% (n=103) female. According to CP types, 89.3% were spastic (n=191) (78.1% of them bilateral, 21.9% unilateral), 5.6% ataxic (n=12) and 5.1% dyskinetic (n=11). Median SF-12 PCS and MCS were 51.69 (25.76-62.92) and 55.36 (26.64-60.69), respectively. When the SF-12 scores were evaluated according to the functional levels of the children, both SF-12 PCS and SF-12 MCS scores differed significantly according to the GMFCS, MACS, CFCS and EDACS levels (P<0.01). Conclusion: The caregiver's quality of life is related to the gross motor and hand functions, oropharyngeal functions, communication and oromotor skills of the children with cerebral palsy. Therefore, comprehensive functional evaluation of children with cerebral palsy is important.

Keywords

• Cerebral palsy
• Caregiver
• Functional status
• Quality of life

References

1. 1. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Developmental medicine and child neurology Supplement. 2007 Feb;109:8-14.
2. 2. Zarit SH. Family care and burden at the end of life. CMAJ. 2004;170(12):1811-2.
3. 3. Vadivelan K, Sekar P, Sruthi SS, et al. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC public health. 2020 2020/05/08;20(1):645.
4. 4. demirhan E, Eriman E, Icagasıoglu A. Functional Status of the Children with Cerebral PalsyAnd Their Mothers’ Psychological Status: A Cross-sectional Study. International Journal of Human and Health Sciences (IJHHS). 2022 01/02;6:17.
5. 5. Dehghan L, Dalvand H, Feizi A, et al. Quality of life in mothers of children with cerebral palsy: The role of children's gross motor function. Journal of child health care : for professionals working with children in the hospital and community. 2016 Mar;20(1):17-26.
6. 6. Dilek B, Batmaz I, KarakoÇ M, et al. Assessment of depression and quality of life in mothers of children with cerebral palsy. Marmara Medical Journal. 2013 01/01;26.
7. 7. Yun C-K. Relationship between the quality of life of the caregiver and motor function of children with cerebral palsy. Physical Therapy Rehabilitation Science. 2017 03/30;6:26-32.
8. 8. Ones K, Yilmaz E, Cetinkaya B, et al. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation and neural repair. 2005 Sep;19(3):232-7.

9. 9. Tuna H, Unalan H, Tuna F, et al. Quality of life of primary caregivers of children with cerebral palsy: a controlled study with Short Form-36 questionnaire. Developmental medicine and child neurology. 2004 Sep;46(9):647-8.
10. 10. Rosenbaum P, Stewart D. The world health organization international classification of functioning, disability, and health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Seminars in Pediatric Neurology. 2004 2004/03/01/;11(1):5-10.
11. 11. 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. 2000 Dec;42(12):816-24.
12. 12. Palisano RJ, Rosenbaum P, Bartlett D, et al. Content validity of the expanded and revised Gross Motor Function Classification System. Developmental medicine and child neurology. 2008 Oct;50(10):744-50.
13. 13. El Ö, Baydar M, Berk H, et al. Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disability and rehabilitation. 2012 2012/06/01;34(12):1030-3.
14. 14. Eliasson AC, Krumlinde-Sundholm L, Rösblad B, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Developmental medicine and child neurology. 2006 Jul;48(7):549-54.
15. 15. Akpinar P, Tezel CG, Eliasson AC, et al. Reliability and cross-cultural validation of the Turkish version of Manual Ability Classification System (MACS) for children with cerebral palsy. Disability and rehabilitation. 2010;32(23):1910-6.
16. 16. Hidecker MJ, Paneth N, Rosenbaum PL, et al. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Developmental medicine and child neurology. 2011 Aug;53(8):704-10.
17. 17. Tschirren L, Bauer S, Hanser C, et al. The Eating and Drinking Ability Classification System: concurrent validity and reliability in children with cerebral palsy. Developmental medicine and child neurology. 2018 Jun;60(6):611-617.
18. 18. Kerem Günel M, Özal C, Seyhan K, et al. Yeme ve İçme Becerileri Sınıflandırma Sistemi’nin Türkçe Versiyonu: Serebral Palsili Çocuklarda Değerlendiri-İçi Güvenilirliği ve Diğer Fonksiyonel Sınıflandırma Sistemleri ile İlişkisi. Türk Fizyoterapi ve Rehabilitasyon Dergisi. 2020 12/01.
19. 19. Ware JE, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: Construction of Scales and Preliminary Tests of Reliability and Validity. Medical Care. 1996;34(3):220-33.
20. 20. Soylu C, Kütük B. SF-12 Yaşam Kalitesi Ölçeği’nin Türkçe Formunun Güvenirlik ve Geçerlik Çalışması. Türk Psikiyatri Dergisi. 2021.
21. 21. Bertelli M, Bianco A, Rossi M, et al. Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy. Journal of intellectual disability research: JIDR. 2011 Dec;55(12):1136-50.
22. 22. Stevenson RD, Conaway M, Chumlea WC, et al. Growth and health in children with moderate-to-severe cerebral palsy. Pediatrics. 2006 Sep;118(3):1010-8.
23. 23. Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 2004 Aug;114(2):e182-91.
24. 24. Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PloS one. 2019;14(7):e0219888.
25. 25. Yilmaz H, Erkin G, İZkİ AA. Quality of Life in Mothers of Children with Cerebral Palsy. ISRN Rehabilitation. 2013 2013/05/16;2013:914738.
26. 26. Xia C, Sun M, Li X, et al. Health-Related Quality of Life and Related Factors among Primary Caregivers of Children with Disabilities in Shanghai, China: A Cross-Sectional Study. Int J Environ Res Public Health. 2020 Dec 12;17(24).
27. 27. Eker L, Tüzün EH. An evaluation of quality of life of mothers of children with cerebral palsy. Disability and rehabilitation. 2004 Dec 2;26(23):1354-9.
28. 28. Jamali A, Karimpour M, Saneii S, et al. Factors Affecting the Caregiver Difficulties in Caring of Children With Cerebral Palsy. Function and Disability Journal. 2020 10/28;3:1-10.
29. 29. Yığman F, Aykın Yığman Z, Ünlü Akyüz E. Investigation of the relationship between disease severity, caregiver burden and emotional expression in caregivers of children with cerebral palsy. Irish Journal of Medical Science (1971 -). 2020 2020/11/01;189(4):1413-1419.
30. 30. Compagnone E, Maniglio J, Camposeo S, et al. Functional classifications for cerebral palsy: correlations between the gross motor function classification system (GMFCS), the manual ability classification system (MACS) and the communication function classification system (CFCS). Research in developmental disabilities. 2014 Nov;35(11):2651-7.
31. 31. Mendoza S, Calvo Muñoz I. Analysis of relationship among the functional classification systems in cerebral palsy and the different types according to the Surveillance of Cerebral Palsy in Europe. Pediatric Dimensions. 2019 01/01;4:1-5.