Yıl: 2012 Cilt: 58 Sayı: 3 Sayfa Aralığı: 229 - 235 Metin Dili: Türkçe İndeks Tarihi: 29-07-2022

Family-centered approach in the management of children with cerebral palsy

Öz:
Engelli çocukların yaşantısında ailenin önemli bir rolü olduğu gittikçe önem kazanan bir görüştür. Aile odaklı bakım, özel ihtiyaçları olan çocukların bakım sürecini kolaylaştırmak ve ailelerine yardımcı olmak için geliştirilmiştir. Aile odaklı bakım çocuk sağlığı alanında yaygın olarak kullanılmakta olup sonrasında pediatrik rehabilitasyon alanında da uygulanmaya başlanmıştır. Aile odaklı bakım anlayışının kabulü ve motor gelişim konusunda yeni teorilerin ortaya çıkması, serebral palsili çocuklara tedavi yaklaşımını etkilemiş, yapılan uygulamalar çocuk yerine daha çok aile ve fonksiyon merkezli hale gelmiştir. Bu derlemenin amacı serebral palside uygulanan tedavi yaklaşımlarının teorik zeminlerini, bir kavramsal yapı olarak aile odaklı bakım anlayışını ve serebral palsili çocukların tedavisinde kullanılan terapi yaklaşımlarına etkilerini anlamak için genel bir bakış sağlamaktır. Türk Fiz T›p Re hab Derg 2012;58:229-35.
Anahtar Kelime:

Konular: Rehabilitasyon

Serebral palsili çocukların tedavisinde Aile odaklı yaklaşım

Öz:
There has been a growing understanding that the family has an important role in the life of children with disabilities. Family-centered care was developed to facilitate the process of care of children with special needs and their families. Since then, it has been widely used in child health and afterward implemented to the pediatric rehabilitation. The acceptance of family-centered care and the emergence of new theories on motor development have influenced the management of children with cerebral palsy. The interventions have become more family- and function-focused, rather than child-focused. The purpose of this review is to provide an overview of the theoretical background of the approaches to cerebral palsy, family-centered care as a conceptual framework and its implications for therapy approaches that are used in the management of children with cerebral palsy. Turk J Phys Med Re hab 2012;58:229-35.
Anahtar Kelime:

Konular: Rehabilitasyon
Belge Türü: Makale Makale Türü: Derleme Erişim Türü: Erişime Açık
  • 1. Robertson CM, Svenson LW, Joffres MR. Prevalence of cerebral palsy in Alberta. Can J Neurol Sci 1998;25:117-22.
  • 2. Mutch L, Alberman E, Hagberg B, Kodama K, Perat MV. Cerebral palsy epidemiology: where are we now and where are we going? Dev Med Child Neurol 1992;34:547-51.
  • 3. Nelson KB. The epidemiology of cerebral palsy in term infants. Ment Retard Dev Disabil Res Rev 2002;8:146-50.
  • 4. Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115:626-36.
  • 5. Ones K, Yılmaz E, Çetinkaya B, Çaglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair 2005;19:232-7.
  • 6. Davis E, Shelly A, Walters E, Boyd R, Cook K, Davern M, et al. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health Dev 2010;36:63-73.
  • 7. Palisano RJ, Almarsi N, Chiarello LA, Orlin MN, Bagley A, Maggs J. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev 2010;36:85-92.
  • 8. Ketelaar M, Volman MJM, Gorter JW, Vermeer A. Stress in parents of children with cerebral palsy: what sources of stres are we talking about? Child Care Health Dev 2008;34:825-9.
  • 9. Liptak GS, Murphy NA; Council on Children With Disabilities. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics 2011;128:1321-9.
  • 10. Amiel-Tison C, Grenier A. Neurological assessment during the first year of life. New York, Oxford: Oxford University Press; 1986.
  • 11. Allen MC, Alexander GR. Using motor milestones as a multistep process to screen preterm infants for cerebral palsy. Dev Med Child Neurol 1997;39:12-6.
  • 12. Bower E. Physiotherapy for cerebral palsy: a historical review. Baillieres Clin Neurol 1993;2:29-54.
  • 13. Bobath B. The very early treatment of cerebral palsy. Dev Med Child Neurol 1967;9:373-90.
  • 14. Cole MB, Tufano R. Applied theories in occupational therapy: a practical approach. Thorofare, NJ: Slack Incorporated; 2008.
  • 15. Bly L. A historical and current view of the basis of NDT. Pediatr Phys Ther 1991;3:131-36.
  • 16. Adams M, Chandler LS, Schuhmann K. Gait changes in children with cerebral palsy following a neurodevelopmental treatment course. Pediatr Phys Ther 2000;12:114-20.
  • 17. Bower E, McLellan D. Evaluating therapy in cerebral palsy. Child Care Health Dev 1994;20:409-19.
  • 18. Butler C, Darrah J. Effects of neurodevelopmental treatment (NDT) for cerebral palsy: an AACPDM evidence report. Dev Med Child Neurol 2001;43:778-90.
  • 19. Hur JJ. Review of research on therapeutic interventions for children with cerebral palsy. Acta Neurol Scand 1995;91:423-32.
  • 20. Thelen E, Smith LB. A dynamic systems approach to the development of cognition and action. Cambridge, MA: The MIT Press; 1994.
  • 21. Thelen E. Motor development: A new synthesis. Am Psychol 1995;50:79-95.
  • 22. Elman J. Development: it’s about time. Dev Sci 2003;6:430-3.
  • 23. Thelen E. The (re)discovery of motor development: learning new things from an old field. Dev Psych 1989;25:946-9.
  • 24. Thelen E, Kelso JAS, Fogel A. Self-organizing systems and infant motor development. Dev Review 1987;7:39-65.
  • 25. Newell KM. Constraints on the development of coordination. In: Wade MG, Whiting TA, editors. Motor development in children: aspects of coordination and control. Dordecht: Marinus Nijhoff Publishers; 1986. p.341-360.
  • 26. Darrah J, Bartlett D. Dynamic systems theory and management of children with cerebral palsy - unresolved issues. Inf Young Children 1995;8:52-9.
  • 27. Bronfenbrenner UV. Six theories of child development: revised formulations and current issues. London: Jessica Kingsley Publishers; 1992.
  • 28. Gibson J, Pick A. An ecological approach to perceptual learning and development. Oxford: Oxford University Press; 2003.
  • 29. Gentile AM. Implicit and explicit processes during acquisition of functional skills. Scan J Occup Ther 1998,5:7-16.
  • 30. Lesensky S, Kaplan L. Motor learning: putting theory into practice. OT Practice 2000;5:13-6.
  • 31. Hadders-Algra M. The neuronal group selection theory: promising principles for understanding and treating developmental motor disorders. Dev Med Child Neurol 2000;42:707-15.
  • 32. Edelman GM. Neural Darwinism: selection and reentrant signaling in higher brain function. Neuron 1993;10:115-25.
  • 33. Sweeney JK, Heriza CB, Blanchard Y, Dusing SC. Neonatal physical therapy. Part II: practice frameworks and evidence-based practice guidelines. Pediatr Phys Ther 2010;22:2-16.
  • 34. Kleim JA, Jones TA. Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. J Speech Lang Hear Res 2008;51:225-39.
  • 35. Rosenbaum P, King S, Law M, King G, Evans J. Family-centred services: a conceptual framework and research review. Phys Occup Ther Pediatr 1998;18:1-20.
  • 36. King S, Teplick R, King G, Rosenbaum P. Family-centred service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol 2004;11:78-86.
  • 37. Institute for Patient and Family-Centered Care. FAQ. Available at:http://www.ipfcc.org/faq.html. Accessed December 29, 2010.
  • 38. Dunst CJ, Trivette CM, Hamby DW. Meta-analysis of family-centered helpgiving practices research. Ment Retard Dev Disabil Res Rev 2007;13:370-8.
  • 39. Hanna K, Rodger S. Towards family-centred practice in paediatric occupational therapy: a review of the literature on parent-therapist collaboration. Aust Occup Ther J 2002;49: 14-24.
  • 40. King G, King S, Rosenbaum P, Goffin R. Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol 1999;24:41-53.
  • 41. Trivette CM, Dunst CJ, Hamby DW, LaPointe NJ. Key elements of empowerment and their implications for early intervention: infanttoddler intervention. Transdisciplin J 1996;6:59-73.
  • 42. Washington K, Schwartz IS. Maternal perceptions of the effects of physical and occupational therapy services on caregiving competency. Phys Occup Ther Pediatr 1996;16:33-54.
  • 43. Caro P, Derevensky JL. Family-focused intervention model: implementation and research findings. Top Early Child Spec Ed 1991;11:66-80.
  • 44. Moxley-Haegert L, Serbin LA. Developmental education for parents of delayed infants: effects on parental motivation and children’s development. Child Dev 1983;54:1324-31.
  • 45. King G, Cathers T, King S, Rosenbaum P. Major elements of parents satisfaction and dissatisfaction with pediatric rehabilitation services. Child Health Care 2001;30:111-34.
  • 46. Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health 2000;36:32-5.
  • 47. Denboba D, McPherson MG, Kenney MK, Strickland B, Newacheck PW. Achieving family and provider partnerships for children with special health care needs. Pediatrics 2006;118:1607-15.
  • 48. Bower E. The multiply handicapped child. In: Wilson BA, McLellan DL, editors. Rehabilitation studies handbook. Cambridge: Cambridge University Press; 1997. p. 315-56.
  • 49. Vojta V. The basic elements of treatment according to Vojta. In: Scrutton D, editor. Management of the motor disorders of children with cerebral palsy. Clinics in Developmental Medicine No.90. Oxford:Blackwell Scientific; 1984. p. 75-85.
  • 50. Bly L. Baby treatment based on NDT principles. Austin,TX: PRO-ED; 1999.
  • 51. Howle JM. Neurodevelopmental treatment approach; theoretical foundations and principles of clinical practise. Laguna Beach, CA: NDTA; 2002.
  • 52. Novak I, Cusick A. Home programmes in paediatric occupational therapy for children with cerebral palsy: where to start? Aust Occup Ther J 2006;53:251-64.
  • 53. Washington K, Schwartz IS. Maternal perceptions of the effects of physical and occupational therapy services on caregiving competency. Phys Occup Ther Pediatr 1996;16:33-54.
  • 54. Novak I, Cusick A, Lowe K. A pilot study on the impact of occupational therapy home programming for young children with cerebral palsy. Am J Occup Ther 2007;61:463-8.
  • 55. Novak I, Cusick A, Lannin N. Occupational therapy home programs for cerebral palsy: double-blind, randomized, controlled trial. Pediatrics 2009;124:606-14.
  • 56. Ketelaar M, Vermeer A, Hart H, van Petegem-van Beek E, Helders PJ. Effects of a functional therapy program on motor abilities of children with cerebral palsy. Phys Ther 2001;81:1534-45.
  • 57. Ahl LE, Johansson E, Granat T, Carlberg EB. Functional therapy for children with cerebral palsy: an ecological approach. Dev Med Child Neurol 2005;47:613-9.
  • 58. Valvano J. Activity-focused motor interventions for children with neurological conditions. Phys Occup Ther Pediatr 2004;24:79-107.
  • 59. Sorsdahl AB, Moe-Nilssen R, Kaale HK, Rieber J, Strand LI. Change in basic motor abilities, quality of movement and everyday activities following intensive, goal-directed, activity-focused physiotherapy in a group setting for children with cerebral palsy. BMC Pediatr 2010;10:26.
  • 60. Löwing K, Bexelius A, Brogren Carlberg E. Activity focused and goal directed therapy for children with cerebral palsy-do goals make a difference? Disabil Rehabil 2009;31:1808-16.
  • 61. Darrah J, Law M, Pollock N. Family-centered functional therapy - a choice for children with motor dysfunction. Inf Young Children 2001;13:79-87.
  • 62. Law M, Darrah J, Pollock N, King G, Rosenbaum P, Russell D. Familycentred functional therapy for children with cerebral palsy: an emerging practice model. Phys Occup Ther Pediatr 1998;18:83-102.
  • 63. Lammi BM, Law M. The effects of family-centred functional therapy on the occupational performance of children with cerebral palsy. Can J Occup Ther 2003;70:285-97.
  • 64. Darrah J, Law MC, Pollock N, Wilson B, Russell DJ, Walter SD, et al. Context therapy: a new intervention approach for children with cerebral palsy. Dev Med Child Neurol 2011;53:615-20.
  • 65. Law MC, Darrah J, Pollock N, Wilson B, Russell DJ, Walter SD, et al. Focus on function: a cluster, randomized controlled trial comparing childversus context-focused intervention for young children with cerebral palsy. Dev Med Child Neurol 2011;53:621-9.
APA AYDIN A, NUR A (2012). Family-centered approach in the management of children with cerebral palsy. , 229 - 235.
Chicago AYDIN AYŞE RESA,NUR AHMET HAKAN Family-centered approach in the management of children with cerebral palsy. (2012): 229 - 235.
MLA AYDIN AYŞE RESA,NUR AHMET HAKAN Family-centered approach in the management of children with cerebral palsy. , 2012, ss.229 - 235.
AMA AYDIN A,NUR A Family-centered approach in the management of children with cerebral palsy. . 2012; 229 - 235.
Vancouver AYDIN A,NUR A Family-centered approach in the management of children with cerebral palsy. . 2012; 229 - 235.
IEEE AYDIN A,NUR A "Family-centered approach in the management of children with cerebral palsy." , ss.229 - 235, 2012.
ISNAD AYDIN, AYŞE RESA - NUR, AHMET HAKAN. "Family-centered approach in the management of children with cerebral palsy". (2012), 229-235.
APA AYDIN A, NUR A (2012). Family-centered approach in the management of children with cerebral palsy. Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi, 58(3), 229 - 235.
Chicago AYDIN AYŞE RESA,NUR AHMET HAKAN Family-centered approach in the management of children with cerebral palsy. Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi 58, no.3 (2012): 229 - 235.
MLA AYDIN AYŞE RESA,NUR AHMET HAKAN Family-centered approach in the management of children with cerebral palsy. Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi, vol.58, no.3, 2012, ss.229 - 235.
AMA AYDIN A,NUR A Family-centered approach in the management of children with cerebral palsy. Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi. 2012; 58(3): 229 - 235.
Vancouver AYDIN A,NUR A Family-centered approach in the management of children with cerebral palsy. Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi. 2012; 58(3): 229 - 235.
IEEE AYDIN A,NUR A "Family-centered approach in the management of children with cerebral palsy." Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi, 58, ss.229 - 235, 2012.
ISNAD AYDIN, AYŞE RESA - NUR, AHMET HAKAN. "Family-centered approach in the management of children with cerebral palsy". Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi 58/3 (2012), 229-235.