Participation into daily life of children with cerebral palsy with multidimensional perspectives: a study protocol

Abstract

Purpose: This research study aimed to examine the relationship between participation and quality of life with impairment and environment (physical, social and attitudinal) aspects in children aged 2-18 years with cerebral palsy (CP) according to framework of International Classification of Functioning, Disability and Health.

Methods: A population-based study of children with CP sampled from 9 different districts of metropolitan area in Ankara will participate. Children were visited in special education and rehabilitation centers and inclusive schools in Ankara and totally 450 children with CP and their parents will be included. The project has two stages: translation, adaptation, validity and reliability study of Life Habits Questionnaire (LIFE-H) and determination of quality of life and participation levels and familial status. In the second stage, beside the LIFE-H, Child Health Questionnaire Parent Form-50 (CHQ-PF 50), Pediatric Disability Inventory (PEDI), Pediatric Outcomes Data Collection Instrument (PODCI), Pediatric Quality of Life Inventory (PedsQL), Impact on Family Scale (IPFAM) and Measurement Process of Care- 56 (MPOC-56) will be used.

Conclusion: This project is original in its methods by directly engaging children with CP and their families, while studying in quantitative terms the crucial outcomes of participation and quality of life.

Keywords

• Cerebral Palsy,participation,quality of life,parents

Çok boyutlu bakış açısıyla serebral palsili çocukların günlük yaşama katılımları: çalışma protokolü

Abstract

Amaç: Projenin amacı, 2-18 yaş arası serebral palsili (SP) çocuklarda, işlevsellik, yeti yitimi ve sağlığın uluslararası sınıflandırmasına uygun olarak, katılımın ve yaşam kalitesinin bozukluk ve çevre ile (fiziksel, sosyal ve tutumsal) olan ilişkilerinin incelenmesidir.

Yöntem: Popülasyon temelli bir çalışma olarak, Ankara kent merkezindeki 9 ilçeden SP’li çocuklar katılacaktır. Ankara’da yaşayan ve özel eğitim ve rehabilitasyon merkezleri ile kaynaştırma okullarına devam eden 450 çocuk ile ebeveynleri çalışmaya dahil edilecektir. Çalışmanın, Life Habits (LIFE-H) anketinin Türkçeye çevrilmesi, uyarlanması, geçerlik ve güvenilirlik çalışmalarının yapılması ile yaşam kalitesi, katılım düzeylerinin belirlenmesi ve ailesel durumun değerlendirilmesi olmak üzere iki aşaması vardır. İkinci aşamada LIFE-H anketinin yanı sıra, Çocuk Sağlığı Anketi Ebeveyn Formu-50 (CHQ-PF-50), Pediatrik Engellilik Envanteri (PEDI), Pediatrik Veri Toplama Aracı (PODCI), Pediatrik Yaşam Kalitesi Envanteri (PedsQL), Aile Etki Ölçeği (IPFAM) ve Bakım Süreçleri Ölçeği- 56 (MPOC-56) kullanılacaktır.

Sonuç: Bu proje, doğrudan SP’li çocukları ve onların ailelerini dahil ederek, katılım ve yaşam kalitesi gibi nicel terimler ile ilgili sonuçları temel alan yöntemi açısından orijinaldir.

Keywords

• Serebral Palsi,katılım,yaşam kalitesi,ebeveynler

References

1. 1. Papavasiliou AS. Management of motor problems in cerebral palsy: a critical update for the clinician. Eur J Paediatr Neurol. 2009; 13:387-396.
2. 2. Rosenbaum P. Family and quality of life: key elements in intervention in children with cerebral palsy. Dev Med Child Neurol. 2011.53 Suppl 4:68-70.
3. 3. Bjornson KF, McLaughlin JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol. 2001;8:183-193.
4. 4. Dickinson HO, Parkinson KN, Ravens-Sieberer U, et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet. 2007;30:2171-2178.
5. 5. Colver A, Fairhurst C, Pharoah PO. Cerebral palsy. Lancet. 2014;5:1240-1249.
6. 6. Varni JW, Burwinkle TM, Sherman SA, et al. Health related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol. 2005;47:592-597.
7. 7. Tan SS, Wiegerink DJ, Vos RC, et al. Developmental trajectories of social participation in individuals with cerebral palsy: a multicentre longitudinal study. Dev Med Child Neurol. 2014;56:370-377.
8. 8. Law M. Participation in the occupations of everyday life. Am J Occup Ther. 2002;56:640–649.

9. 9. Ko IH, Kim JH, Lee BH. Relationships between lower limb muscle architecture and activities and participation of children with cerebral palsy. J Exerc Rehabil. 2013;9:368-374.
10. 10. Bjornson KF, Zhou C, Stevenson, RD et al. Relation of stride activity and participation in mobility-based life habits among children with cerebral palsy. Arch Phys Med Rehabil. 2014; 95:360-368.
11. 11. Serdaroğlu A, Cansu A, Ozkan S, et al. Prevalence of cerebral palsy in Turkish children between the ages of 2 and 16 years. Dev Med Child Neurol. 2006; 48:413-416.
12. 12. Donkervoort M, Roebroeck M, Wiegerink D, et al. Determinants of functioning of adolescents and young adults with cerebral palsy. Disabil Rehabil. 2007;29:453-63.
13. 13. Noreau L, Fougeyrollas P, Vincent C. The LIFE-H: Assessment of the quality of social participation. Technology and disability. 2002;14:113-118.
14. 14. Noreau L, Lepage C, Boissiere L, et al. Measuring participation in children with disabilities using the Assessment of Life Habits. Dev Med Child Neurol. 2007;49:666-671.
15. 15. Desrosiers J, Noreau L, Robichaud L, et al. Validity of the assessment of life habits in older adults. J Rehabil Med. 2004;36:177-182.
16. 16. Daltroy LH, Liang MH, Fossel AH, et al. The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. J Pediatr Orthop.1998;18:561-571.
17. 17. Keskin D, Kerem Günel M, Aktan T. Reliability and validity of Turkish version of Pediatric Outcome Data Collection Instrument (PODCI) for people with cerebral palsy. Fizyoter Rehabil.2013; 24:118-126.
18. 18. Haley SM, Coster WJ, Ludlow LH, et al. Paediatric Evaluation of Disability Inventory (PEDI): Development, standardisation and administration manual. 1992; Boston, MA, New England Medical Centre Hospitals.
19. 19. Erkin G, Elhan AH, Aybay C, et al. Validity and reliability of the Turkish translation of the Pediatric Evaluation of Disability Inventory (PEDI). Disabil Rehabil. 2007;29:1271-1279.
20. 20. Palisano RJ, Rosenbaum P, Bartlett D, et al. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008;50:744-750.
21. 21. El Ö, Baydar M, Berk H, et al. Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disabil Rehabil. 2012; 34:1030-1033.
22. 22. 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. Dev Med Child Neurol. 2006;48:549-54.
23. 23. 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. Disabil Rehabil. 2010;32:1910-16.
24. 24. Hidecker MJ, Paneth N, Rosenbaum PL, et al. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Dev Med Child Neurol. 2011;53:704-710.
25. 25. Daltroy LH, Liang MH, Fossel AH. The POSNA Pediatric Musculoskeletal Functional Health Questionnaire: report on reliability, validity, and sensitivity to change. J Pediatr Orthop. 1998;18:561-571.
26. 26. Landgraf JM, et al. The CHQ User's Manual. Boston, MA: The Health Institute, New England Medical Centre, 1996.
27. 27. Ozdogan H, Ruperto N, Kasapçopur O, et al. The Turkish version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol. 2001;19(4 Suppl 23):S158-162.
28. 28. Varni JW, Seid M, Rode AC. The Peds QL TM: The measurement model for the Pediatric Quality of Life Inventory. Med Care. 1999;37:126-139.
29. 29. Çakin Memik N, Ağaoğlu B, Coşkun A, et al. The Validity and Reliability of the Turkish Pediatric Quality of Life Inventory for Children 13-18 Years Old. Turk Psikiyatri Derg. 2007;18:353-363.
30. 30. Çakın Memik N. Çocuklar İçin Yaşam Kalitesi Ölçeği Geçerlik ve Güvenilirlik Çalışması. Basılmamış Uzmanlık Tezi. 2005; KOÜTF, Kocaeli.
31. 31. King S., Rosenbaum P., King G. The measure of processes of care (MPOC): A means to assess family centred behaviours of health care providers. Neurodevelopmental Clinical Research Unit. 1995; McMaster University Hamilton, ON.
32. 32. King, S., King, G., Rosenbaum, P. Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC 20). J Child Health Care. 2004;33:35–57.
33. 33. King, S., Teplicky, R., King, G, et al. Family centered service for children with cerebral palsy and their families: A review of the literature. Semin Pediatr Neurol. 2004;11:78–86.
34. 34. Stein RE, Riessman CK. The development of an impact-on-family scale: preliminary findings. Med Care. 1980;18:465–472.
35. 35. Bek N, Simsek IE, Erel S, et al. Turkish version of impact on family scale: a study of reliability and validity. Health Qual Life Out. 2009;4:1-7.