DOI QR코드

DOI QR Code

Relationship Among Parents' Quality of Life, Functional Level, Performance in the Activities of Daily Living, and the Quality of Life in School-aged Children With Spastic Cerebral Palsy

학령기 경직성 뇌성마비 아동 부모의 삶의 질과 아동의 삶의 질 및 기능과 일상생활활동 수행 수준의 관련성

  • Lee, Ye-seul (Dept. of Physical Therapy, National Traffic Rehabilitation Hospital) ;
  • Oh, Duck-won (Dept. of Physical Therapy, College of Health Science, Cheongju University)
  • 이예슬 (국립교통재활병원 물리치료실) ;
  • 오덕원 (청주대학교 보건의료대학 물리치료학과)
  • Received : 2016.10.17
  • Accepted : 2016.12.08
  • Published : 2017.02.19

Abstract

Background: In cerebral palsy (CP), parents' quality of life and rearing attitude are considered possible factors that influence patients' quality of life, function level, and performance in daily activities. Despite these facts, little attention has been given to demonstrate a relation between these factors. Objects: This study aimed to demonstrate the relationship between parents' quality of life, functional level, and performance in daily activities, the quality of life of school-aged children with spastic CP. Methods: This study included 24 parents of school-aged children with spastic CP. The KIDSCREEN-52 and World Health Organization quality of life (WHOQOL)-BREF questionnaires (including physical, psychological, social, and environmental domains) were used as research tools to assess the quality-of-life profiles of the children with spastic CP and those of their parents, respectively. In addition, the function levels and performance in daily activities of the children with CP were assessed by using the gross motor function measure (GMFM) and modified Barthel index (MBI). Correlation and multiple regression analyses were performed to clarify the determinants of the quality of life of the children with CP. Results: The KIDSCREEN-52 score correlated with the total score (r=.735, p<.01) and all domains of the WHOQOL-BREF questionnaire (physical: r=.542, p<.01; psychological: r=.690, p<.01; social: r=.568, p<.01; and environmental: r=.783, p<.01). In addition, significant correlation was found between the KIDSCREEN-52 and MBI scores (r=.411, p<.05), and between the MBI and GMFM scores (r=.427, p<.05). After controlling for age, gender, paralytic type, GMFM, and MBI, the WHOQOL-BREF score ($R^2=.621$), particularly in the environmental domain ($R^2=.699$), remained independently related to the quality of life of the children. Conclusion: These findings suggest that the quality of life of school-aged children with spastic CP can be influenced by the quality of life of their parents. This study provides useful information for future studies to investigate the quality of life of children with CP.

Keywords

References

  1. Ahmadizadeh Z, Rassafiani M, Khalili MA, et al. Factors associated with quality of life in mothers of children with cerebral palsy in Iran. Hong Kong J Occup Ther. 2015;25:15-22. https://doi.org/10.1016/j.hkjot.2015.02.002
  2. Almqvist L, Granlund M. Participation in school environment of children and youth with disabilities: A person-oriented approach. Scand J Psychol. 2005;46(3):305-314. https://doi.org/10.1111/j.1467-9450.2005.00460.x
  3. Avery LM, Russell DJ, Raina PS, et al. Rasch analysis of the gross motor function measure: Validating the assumptions of the rasch model to create an interval-level measure. Arch Phys Med Rehabil. 2003;84(5):697-705. https://doi.org/10.1016/S0003-9993(02)04896-7
  4. Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol. 2002;44(5):309-316. https://doi.org/10.1111/j.1469-8749.2002.tb00816.x
  5. Canning RD, Harris ES, Kelleher KJ. Factors predicting distress among caregivers to children with chronic medical conditions. J Pediatr Psychol. 1996;21(5):735-749. https://doi.org/10.1093/jpepsy/21.5.735
  6. Dalvand H, Dehghan L, Feizy A, et al. Effect of the bobath technique, conductive education and education to parents in activities of daily living in children with cerebral palsy in Iran. Hong Kong J Occup Ther. 2009;19(1):14-19. https://doi.org/10.1016/S1569-1861(09)70039-7
  7. Hong SD, Yang JW, Jang WS, et al. The KIDSCREEN-52 quality of life measure for children and adolescents (KIDSCREEN-52-HRQOL): Reliability and validity of the Korean version. J Korean Med Sci. 2007;22(3):446-452. https://doi.org/10.3346/jkms.2007.22.3.446
  8. Huang YP, Kellett U, St John W. Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy. J Clin Nurs. 2012;21(1-2): 189-197. https://doi.org/10.1111/j.1365-2702.2011.03741.x
  9. Jegal KC. A study on positive self-concept and stress in mothers of the mentally retarded children. Daegu, Daegu University, Master Thesis. 2001.
  10. Jung DY, Choi JA. A comparative study on psychological well-being of parent of children with and without disabilities. J Emot Behav Disord. 2010;26(3):319-343.
  11. Jung HY, Park BK, Shin HS, et al. Development of the Korean version of modified Barthel index (K-MBI): Multi-center study for subjects with stroke. Ann Rehabil Med. 2007;31(3):283-297.
  12. Kang JR, Kang EJ. Constructing a parent-child relationship-focused parent counseling model. Journal of Education Studies. 2009;40(1):117-140.
  13. Kim DH. A study on the health state and burden of the chronic patient's family members. Busan, Pusan National University, Master Thesis. 1998.
  14. Kim MJ. The effect of information accessibility to welfare services of parents of children with developmental disabilities on the quality of family life. Seoul, Chung-Ang University, Master Thesis. 2014.
  15. Kim WH, Hahn SJ, Im HJ, et al. Reliability and validity of the Korean world health organization quality of life (WHOQOL)-BREF in people with physical impairments. Ann Rehabil Med. 2013;37(4):488-497. https://doi.org/10.5535/arm.2013.37.4.488
  16. Ko JY, Kim MY. Reliability and responsiveness of the gross motor function measure-88 in children with cerebral palsy. Phys Ther. 2013;93(3): 393-400. https://doi.org/10.2522/ptj.20110374
  17. Law M, King G, King S, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol 2006;48(05):337-342. https://doi.org/10.1017/S0012162206000740
  18. Lee BH, Ko JY. Influential factors for the health related quality of life in children with mental retardation and cerebral palsy. J Spec Educ Rehabil Sci. 2010;49(2):105-126.
  19. Lee BJ. Family environment and quality of life for children. Health and Welfare Forum. 2015;220:6-13.
  20. Lee BM. Comparison of quality of life and activity participation type between school age normal children and attention deficit/hyperactivity disorder children. Wonju, Yonsei University, Master Thesis. 2014.
  21. Lee BR, Park HJ. Self-reported quality of life in Korean school-age children. Korean J Develop Psychol. 2011;24(3):129-152.
  22. Lee HJ, Eo YS. A study on family functioning and burden of parents with cerebral palsy children. Korean J Child Health Nurs. 2000;6(2):199-211.
  23. Lee JW, Chung EJ, Lee BH. A comparison of the functions, activities and participation in schoolaged children with cerebral palsy by GMFCS. Journal of Rehabilitation Research. 2013;17(3):375-389.
  24. Lee KH, Kang JH. Study on influences of the quality of life through the leisure activities for handicapped children's parents. Teacher Education Research. 2008;47(3):119-135.
  25. Li-Tsang CWP, Yau MKS, Yuen HK. Success in parenting children with developmental disabilities: Some characteristics, attitudes and adaptive coping skills. Br J Dev Disabil. 2013;47(93):61-71.
  26. Mahoney FI, Barthel DW. Functional evaluation: The Barthel index. Md State Med J. 1965;14:61-65.
  27. Mancini MC, Fiuza PM, Rebelo JM, et al. Comparison of functional activity performance in normally developing children and children with cerebral palsy. Arq Neuropsiquiatr. 2002;60(2-b):446-452. https://doi.org/10.1590/S0004-282X2002000300020
  28. McCarthy ML, Silberstein CE, Atkins EA, et al. Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol. 2002;44(7):468-476. https://doi.org/10.1111/j.1469-8749.2002.tb00308.x
  29. Min SK, Kim KI, Lee CI, et al. Development of the Korean versions of WHO quality of life scale and WHOQOL-BREF. Qual Life Res. 2002;11(6):593-600. https://doi.org/10.1023/A:1016351406336
  30. Mohammed FMS, Ali SM, Mustafa MAA. Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014-2015). J Neurosci Rural Pract. 2016;7(3):355-361. https://doi.org/10.4103/0976-3147.182778
  31. Oh YP, Kim NI. The effects of vertebra rehabilitation exercise therapy on motion function and EMG in the individuals with cerebral palsy. Korean J Phys Educ. 2004;43:927-936.
  32. Okurowska-Zawada B, Kulak W, Wojtkowski J, et al. Quality of life of parents of children with cerebral palsy. Prog Health Sci. 2011;1(1):116-123.
  33. Ones K1, Yilmaz E, Cetinkaya B, et al. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair. 2005;19(3):232-237. https://doi.org/10.1177/1545968305278857
  34. Pirpiris M, Gates PE, McCarthy JJ, et al. Function and well-being in ambulatory children with cerebral palsy. J Pediatr Orthop. 2006;26(1):119-124. https://doi.org/10.1097/01.bpo.0000191553.26574.27
  35. Ravens-Sieberer U, Gosch A, Rajmil L, et al. Kidscreen-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5(3):353-364. https://doi.org/10.1586/14737167.5.3.353
  36. Rosenbaum P, Paneth N, Leviton A, et al. A report: The definition and classification of cerebral palsy april 2006. Dev Med Child Neurol. 2007;109:8-14.
  37. Tessier DW, Hefner JL, Newmeyer A. Factors Related to Psychosocial Quality of Life for Children with Cerebral Palsy. Int J Pediatr. 2014;2014:204-386.
  38. Waters E, Maher E, Salmon L, et al. Development of a condition-specific measure of quality of life for children with cerebral palsy: Empirical thematic data reported by parents and children. Child Care Health Dev. 2005;31(2):127-135. https://doi.org/10.1111/j.1365-2214.2004.00476.x
  39. Whittingham K, Wee D, Sanders MR, et al. Predictors of psychological adjustment, experienced parenting burden and chronic sorrow symptoms in parents of children with cerebral palsy. Child Care Health Dev. 2013;39(3):366-373. https://doi.org/10.1111/j.1365-2214.2012.01396.x