AN EXAMINATION OF THE FACTORS AFFECTING COMPLIANCE OF PARENTS OF CHILDREN WITH CEREBRAL PALSY TO HOME PROGRAM: A SCALE DEVELOPMENT STUDY

Year 2020, Volume: 31 Issue: 2, 103 - 114, 28.08.2020

Sinem Asena Sel , Mintaze Kerem Günel Meltem Şengelen Mutlu Hayran

https://doi.org/10.21653/tjpr.582265

Cited By: 2

Abstract

Purpose: Home program is a set of recommendations to be implemented outside of treatment sessions given to parents by physiotherapists. This study aimed to develop a scale to determine parents' compliance and effectiveness of home programs. Methods: In order to develop the scale, 48 items were identified as a result of clinical experience and opinions of experts in pediatric rehabilitation, open interviews with parents, and literature review. The items were reduced to 28 items based on the views of four pediatric neurologists and seven physiotherapists with at least five years of clinical experience in the field. Parents of 155 children with cerebral palsy (CP) were administered and validity and reliability analyses were performed. Gross Motor Classification System, Manuel Ability Classification System, Eating and Drinking Ability Classification System, and Communication Function Classification System levels were determined. Parents' anxiety and depression levels were measured using the Beck Depression Inventory, and Children's quality of life was determined using the Pediatric Outcomes Data Collection Instrument. Results: Test-retest value of the developed scale was found to be ICC=0.939, and internal consistency was Cronbach's alpha coefficient=0.659. It was found that individuals with CP with a Gross Motor Function Classification System level V had higher compliance with the home program (p=0.020). Conclusion: The validity and reliability of “Questionnaire of Parents of Children with Cerebral Palsy Compliance on Physiotherapy Home Program” were established. The scale was competent enough to determine the effectiveness of a home program given by physiotherapists and adaptation of family/ caregivers to home program.

SEREBRAL PALSİLİ ÇOCUKLARIN EBEVEYNLERİNİN EV PROGRAMINA UYUMUNA ETKİ EDEN FAKTÖRLERİN İNCELENMESİ: BİR ÖLÇEK GELİŞTİRME ÇALIŞMASI

Abstract

Amaç: Ev programı, fizyoterapistler tarafından ebeveynlere tedavi seansı dışında uygulanmak üzere verilen öneriler bütünüdür. Bu çalışmanın amacı, ev programının etkinliği ve ailenin/bakım verenlerin ev programına uyumunu belirleyecek bir ölçek geliştirmekti. Yöntem: Ölçeğin geliştirilmesi için pediatrik rehabilitasyon alanındaki uzmanların klinik tecrübe ve görüşleri, aileler ile yapılan açık görüşme ve literatür taraması sonucu 48 madde belirlendi. Bu maddeler alanda en az beş yıl klinik deneyimi bulunan dört pediatrik nörolog ve yedi fizyoterapistin görüşleri temel alınarak ölçek 28 maddeye indirildi. Serebral palsili (SP) çocuk sahibi 155 ebeveyne uygulandı ve geçerlik ve güvenirlik analizleri yapıldı. Çocukların Kaba Motor Fonksiyon Sınıflandırma Sistemi, El Becerileri Sınıflandırma Sistemi, Yeme İçme Becerileri Sınıflandırma Sistemi ve İletişim Becerileri Sınıflandırma Sistemi seviyeleri belirlendi. Ebeveynlerin depresyon seviyesi Beck Depresyon Envanteri ile ölçüldü. Çocukların yaşam kalitesi, Pediatrik Veri Toplama Aracı ile değerlendirildi. Sonuçlar: Geliştirilen ölçeğin, test-tekrar test değeri ICC=0,939 ve iç tutarlılığı Cronbach alfa katsayısı=0,659 olarak bulundu. Kaba Motor Fonksiyon Sınıflandırma Sistemi seviyesi V olan SP’li bireylerin ev programına uyumu daha yüksekti (p=0,020). Tartışma: Geliştirilen “Serebral Palsili Çocukların Ebeveynlerinin Fizyoterapi ve Rehabilitasyon Ev Programına Uyumlarını Değerlendirme Ölçeği”nin geçerli ve güvenir olduğu belirlendi. Fizyoterapistler tarafından verilen ev programının etkinliği, ailenin/bakım verenlerin ev programına uyumunu belirleyecek düzeyde olduğu saptandı.

Keywords

Ölçek Geliştirme, Ev Programı, Serebral Palsi, Rehabilitasyon

References

• 1. Novak I. Effective home programme intervention for adults: a systematic review. Clin Rehabil. 2011;25(12):1066–85.
• 2. Rosenbaum P, Paneth N, Leviton A, Goldstein A,Bax M, Dimano D, et al. Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol. 2005;47(8):571-6.
• 3. 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 Occupational Ther. 2007;61(4): 463-8.
• 4. Schreiber JM, Effgen SK, Palisano RJ. Effectiveness of parental collaboration on compliance with a home program. Pediatr Phys Ther. 1995;7(2):59–64.
• 5. Rasmussen L, Justice D, Chang KW, Nelson VS, Yang LJ, et al. Home exercise DVD promotes exercise accuracy by caregivers of children and adolescents with brachial plexus palsy. PM R. 2013;5(11): 924-30.
• 6. Katz-Leurer M, Rotem H, Keren O, Meyer S. The effects of a home-based task-oriented exercise programme on motor and balance performance in children with spastic cerebral palsy and severe traumatic brain injury. Clin Rehabil. 2009;23(8):714-24.
• 7. Rosenbaum P, King S, Law M, King G, Evans J. Family-centred service: a conceptual framework and research review. Phys Occup Ther Pediatr. 2009;18(1):1-20.
• 8. Navarro-Lillo C, Medina-Mirapeix, Escolar-Reina P, Montilla-Herrador J, Gomez-Arnaldos F, Oliviera-Sousa SL, et al. Parents of children with physical disabilities perceive that characteristics of home exercise programs and physiotherapists’ teaching styles influence adherence: a qualitative study. J Physiother. 2015;61(2):81–6.
• 9. Jacopsen RM, Ginde S, Mussatto K, Neubauer J, Earing M, Danduran M. Can a home-based cardiac physical activity program improve the physical function quality of life in children with fontan circulation? Congenit Heart Disease. 2016;11(2):175–82.
• 10. Chappell F, Williams B. Rates and reasons for non-adherence to home physiotherapy in paediatrics. Physiotherapy. 2002;88(13):8–147.
• 11. Galil A, Carmel S, Lubetzky H, Vered S, Heiman N. Compliance with home rehabilitation therapy by parents of children with disabilities in Jews and Bedouin in Israel. Dev Med Child Neurol. 2001;(43):261–8.
• 12. Piggot J, Hocking C, Paterson J. Parental adjustment to having a child with cerebral palsy and participation in home therapy programmes. Phys Occup Ther Pediatr. 2003;(23):5–29.
• 13. Happ MB, Hoffman LA, Higgins LW, DiVirgilio D, Orenstein DM. Parent and child perceptions of a self-regulated, home-based exercise program for children with cystic fibrosis. Nurs Res. 2013;62(5): 305–14.
• 14. Wang T, Peng Y, Chen Y, Lu T, Liao H, Tang P, et al. A home-based program using patterned sensory enhancement improves resistance exercise effects for children with cerebral palsy: a randomized controlled trial. Neurorehabil Neural Repair. 2013;27(8):684–94.
• 15. World Health Organization. International Classification of Functioning, Disability, and Health: Children & Youth Version: ICF-CY. World Health Organization, 2007
• .16. Novak I. Effective home programme intervention for adults: a systematic review. Clin Rehabil. 2011;25(12):1066–85.
• 17. Gorgon EJR. Caregiver-provided physical therapy home programs for children with motor delay: a scoping review. Phys Ther. 2018;98(6):480-93.
• 18. Tezbaşaran A. Likert tipi ölçek geliştirme klavuzu. Ankara:Türk Psikiyatri Derneği Yayınları; 1997.
• 19. Alpar R. Spor sağlık ve eğitim bilimlerinden örneklerle uygulamalı istatistik geçerlilik-güvenirlik-SPSS'de çözümleme adımlarıyla birlikte. 3. baskı. Ankara: Detay Yayıncılık; 2016.
• 20. Lawshe C.H. A quantitative approach to content validity 1. Personnel Psychology. 1975;28(4):563-75.
• 21. El Ö, Baydar M, Berk H, Peker O, Koşay C, Demital Y. Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disabil Rehabil. 2012;34(12):1030-3.
• 22. Palisano R, Rosenbaum P, Bartlett D, Livingston M. GMFCS-E&R. Hamilton: CanChild Centre for Childhood Disability Research, McMaster University; 2007.
• 23. Eliasson AC, Krumlinde Sundholm L, Rösblad B, Beckung E, Arner M, 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(7):549-54.
• 24. Akpınar P, Tezel CG, Eliasson AC, Içağasıoğlu A. Reliability and cross-cultural validation of the Turkish version of Manual Ability Classification System (MACS) for children with cerebral palsy. Disabil Rehabil. 2010;32(23):1910-6.
• 25. Hidecker MJC, Paneth N, Rosenbaum PL, Kent RD, Lillie J, Eulenberg JB, Taylor K. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Dev Med Child Neurol. 2011;53(8):704-10.
• 26. Sellers D, Mandy A, Pennington L, Hankins M, Morris C. Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Dev Med Child Neurol. 2014;56(3):245–51.
• 27. Günel MK. Yeme ve İçme Becerileri Sınıflandırma Sistemi [Internet]. https://www.sussexcommunity.nhs.uk/get-involved/research/chailey-research/edacs-request. 15 Nisan 2018.
• 28. Hisli N. "A study on the validity of the Beck depression inventory." J Psychol. 1989;6:118-26.
• 29. Hisli N. "Validity and reliability of the Beck depression inventory in university students." J Psychol. 1989;7: 3- 13.
• 30. Dilbay Keskin N, Kerem Günel M, Timuçin AKTAN. Pediatrik Veri Toplama Aracının (PVTA) Türkçe versiyonunun serebral palsili bireylerde geçerlik ve güvenirliği. Fizyoterapi Rehabilitasyon. 2013; 24(1):118-126.
• 31. Mei, Zuguo, et al. Validity of body mass index compared with other body-composition screening indexes for the assessment of body fatness in children and adolescents. The Am J Clin Nutr. 2002;75(6): 978-985.