European Journal of Adapted Physical Activity 14, 13 (2021) | DOI: 10.5507/euj.2021.005

Parent perceptions of motor competence in children with charge syndrome

Pamela Beach1*, Alexandra Stribing2, Melanie Perreault1, Lauren Lieberman1
1 Department of Kinesiology, Sports Studies, and Physical Education, State University of New York’s at Brockport, Brockport, NY, USA
2 Department of Physical Education, University of South Carolina, Columbia, SC, USA

CHARGE Syndrome (CS) is a low incidence disorder with unique characteristics including deafblindness, growth deficiencies, heart defects, and atresia choanae. The purpose of this study was to examine parents’ perceptions of motor competence in their child with CS as well as the value and support they provide on motor competence compared to parents of children without disabilities. Parents of 33 children with CS (Mage = 6.8 years SD=2.6) and parents of 38 peers without disabilities (Mage = 7.0 years SD=2.3) completed a demographic and a 32-item parents’ perception questionnaire regarding their confidence in their child’s motor competence. From the results there were significantly lower motor competence scores in parents’ ratings of children with CS; however, they participated with their child in movement skills and tracked their child’s movement skills more often than parents of children without disabilities. No group differences were found in the belief that their child can change their movement skills, or in the importance of motor competence. These findings will assist in the understanding of the impact of parenting a child with CS upon their perception of their child’s motor competence and the level of support they provide their child. This information indicates the important role that parents of children with severe disabilities have in their child’s motor development.

Keywords: severe disability; youth; motor development; deafblindness; parental support

Received: October 3, 2020; Revised: March 14, 2021; Accepted: April 30, 2021; Prepublished online: October 23, 2021; Published: November 22, 2021  Show citation

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Beach, P., Stribing, A., Perreault, M., & Lieberman, L. (2021). Parent perceptions of motor competence in children with charge syndrome. European Journal of Adapted Physical Activity, 14(2), 13. doi: 10.5507/euj.2021.005
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    References

    1. Barnett, L., Hinkley, T., Okely, A. D., & Salmon, J. (2013). Child, family and environmental correlates of children's motor skill proficiency. Journal of Science and Medicine in Sport, 16(4), 332-336. https://doi.org/10.1016/j.jsams.2012.01.011 Go to original source... Go to PubMed...
    2. Barnett, L. M., Stodden, D. F., Hulteen, R. M., & Sacko, R. S. (2020). Motor competence assessment. In T. Brusseau, S. Fairclough, & D. Lubans. The Routledge Handbook of Youth Physical Activity. (pp. 384-408). New York, NY: Routledge. Go to original source...
    3. Blake, K.D., Davenport, S.L., Hall, B.D., Hefner, M.A., Pagon, R.A., Williams, M.S., … Graham, J.M. (1998). CHARGE association: An update and review for the primary pediatrician. Clinical Pediatrics, 37, 159-173. https://doi.org/10.1177/000992289803700302 Go to original source... Go to PubMed...
    4. Blake, K.D., & Prasad, C. (2006). CHARGE syndrome. Orphanet Journal of Rare Diseases,1, 34. https://doi.org/10.1186/1750-1172-1-34 Go to original source... Go to PubMed...
    5. Bowling, A., Blaine, R. E., Kaur, R., & Davison, K. K. (2019). Shaping healthy habits in children with neurodevelopmental and mental health disorders: Parent perceptions of barriers, facilitators and promising strategies. International Journal of Behavioral Nutrition and Physical Activity, 16(1), 52. https://doi.org/10.1186/s12966-019-0813-6 Go to original source... Go to PubMed...
    6. CHARGE Syndrome (2019). Retrieved from https://rarediseases.org/rare-diseases/charge- syndrome
    7. Clancy, C., Jackson, B., Dimmock, J. A., & Thornton, A. L. (2017). Parents and the Pygmalion Effect: Exploring relations between parent efficacy beliefs and children's fundamental movement skills. Journal of Sport & Exercise Psychology, 39, S56-S56.
    8. Clark, J. E., & Metcalfe, J. S. (2002). Mountain of motor development: A metaphor. In J. E. Clark & J. Humphrey (Eds.), Motor development: Research and reviews (Vol. 2, pp. 163-190). Reston, VA: NASPE Publications.
    9. Cools, W., De Martelaer, K., Samaey, C., & Andries, C. (2011). Fundamental movement skill performance of preschool children in relation to family context. Journal of Sports Sciences, 29(7), 649-660. https://doi.org/10.1080/02640414.2010.551540 Go to original source... Go to PubMed...
    10. Dammeyer, J. (2012). Development and characteristics of children with Usher syndrome and CHARGE syndrome. International Journal of Pediatric Otorhinolaryngology, 76, 1292-1296. https://doi.org/10.1016/j.ijporl.2012.05.021 Go to original source... Go to PubMed...
    11. Davison, K.K., Mâsse, L.C., Timperio, A., Frenn, M.D., Saunders, J., Mendoza, J.A., Gobbi, E., Hanson, P., & Trost, S.G. (2013). Physical activity parenting measurement and research: Challenges, explanations, and solutions. Childhood Obesity, 9 (Suppl. 1), S103-S109. https://doi.org/10.1089/chi.2013.0037 Go to original source... Go to PubMed...
    12. Deuce, G., Howard, S., Rose, S., & Fuggle, C. (2012). A study of CHARGE Syndrome in the UK. The British Journal of Visual Impairment, 30(2), 91-100. https://doi.org/10.1177/0264619612443883 Go to original source...
    13. Foster, E., Silliman-French, L., & Grenier, M. (2020). Parents' perceptions of constraints impacting the development of walking in children with CHARGE syndrome. Research and Practice for Persons with Severe Disabilities. 45(3), 196-211. https://doi.org/10.1177/1540796920927656 Go to original source...
    14. Foster, E., Lieberman, L., Perreault, M., & Haibach-Beach, P. (2019). Constraints model for improving motor skills in children with CHARGE syndrome. Palaestra, 33(2), 39-44. https://doi.org/10.1177/0145482X20939469 Go to original source...
    15. Grenier, M., & Lieberman, L.J. (Eds) (2018). Physical education for children with moderate to severe disabilities. Champaign, IL: Human Kinetics.
    16. Haegele, J. (2018). Youth leisure-time physical activity from the perspectives of young adults with visual impairments. European Journal of Adapted Physical Activity, 11(2), 1-13. https://doi.org/10.5507/euj.2018.010 Go to original source...
    17. Haibach-Beach, P., Perreault, M., Lieberman, L., & Foster, E. (2020). Independent Walking and Balance in Children with CHARGE Syndrome. British Journal of Visual Impairment. 00(0), 1-10. https://doi.org/10.1177/0264619620946068 Go to original source...
    18. Haibach-Beach, P., Perreault, M, Lieberman, L., & Foster, E. (2019). Gross motor skill performance in children with CHARGE Syndrome: Research to Practice. Research in Developmental Disabilities, 91. https://doi.org/10.1016/j.ridd.2019.05.002 Go to original source... Go to PubMed...
    19. Haibach, P., & Lieberman, L.J. (2013). Balance and the self-efficacy of balance in children with CHARGE Syndrome. The Journal of Visual Impairment and Blindness, 107, 297-309. https://doi,org/10.1177/0145482X1310700406 Go to original source...
    20. Harter, S. (1987). The determinants and mediational role of global self-worth in children. In: N. Eisenberg, (Ed.), Contemporary Topics in Developmental Psychology (pp. 219-242). New York, NY: John Wiley.
    21. Hartshorne, T.S., Hefner, M.A., & Davenport, S.L.H. (2005). Behavior in CHARGE syndrome: Introduction to the special topic. American Journal of Medical Genetics, 133A, 228-231. https://doi.org/10.1002/ajmg.a.30541 Go to original source... Go to PubMed...
    22. Hartshorne, T.S., Heussler, H.S., Dailor, A.N., Williams, G.L. Papadopoulos, D., & Brandt, K.K. (2009). Sleep disturbances in CHARGE syndrome: types and relationships with behavior and caregiver well-being. Developmental Medicine & Child Neurolology, 51, 143-150. https://doi.org/10.1111/j.1469-8749.2008.03146.x Go to original source... Go to PubMed...
    23. Hartshorne, T. S., Nicholas, J., Grialou, T. L., & Russ, J. M. (2007). Executive function in CHARGE syndrome. Child Neuropsychology, 13(4), 333-344. https://doi.org/10.1080/09297040600850944 Go to original source... Go to PubMed...
    24. Imel, G., Hartshorne, T.S., Slavin, L.J., & Kanouse, S.K. (2020). Participation in and barriers to recreation in CHARGE Syndrome. Palaestra, 34, 38-43.
    25. IBSA. International Blind Sports Association. (2021, March8). Classification. Retrieved from https://www.ibsasport.org/classification/
    26. Jackson, B., & Beauchamp, M. R. (2010). Self-efficacy as a metaperception within coach-athlete and athlete-athlete relationships. Psychology of Sport and Exercise, 11(3), 188-196. https://doi.org/10.1016/j.psychsport.2009.12.005 Go to original source...
    27. Jackson, B., Whipp, P. R., Chua, K. P., Pengelley, R., & Beauchamp, M. R. (2012). Assessment of tripartite efficacy beliefs within school-based physical education: Instrument development and reliability and validity evidence. Psychology of Sport and Exercise, 13(2), 108-117. https://doi.org/10.1016/j.psychsport.2011.10.007 Go to original source...
    28. Janssen, N., Bergman, J.E.H., Swertz, M.A., Tranebjaerg, L., Lodahl, M., Schoots, J., Hofstra, R.M.W., van Ravenswaaij-Arts, C.M.A., & Hoefsloot, L.H. (2012). Mutation update on the CHD7 gene involved in CHARGE syndrome. Human Mutation, 33, 1149-1160. https://doi.org/10.1002/humu.22086 Go to original source... Go to PubMed...
    29. Kef, S., & Dekoviæ, M. (2004). The role of parental and peer support in adolescents well-being: a comparison of adolescents with and without a visual impairment. Journal of Adolescence, 27(4), 453-466. https://doi.org/10.1016/j.adolescence.2003.12.005 Go to original source... Go to PubMed...
    30. Lane, K., Lieberman, L.J., Haibach-Beach, P., Perreault, M., & Columna, L. (2020). Parental perspectives on physical education services for children with CHARGE Syndrome. Special Education Journal, 55(2), 90-100. https://doi.org/10.1177/0022466920942769 Go to original source...
    31. Lent, R. W., & Lopez, F. G. (2002). Cognitive ties that bind: A tripartite view of efficacy beliefs in growth-promoting relationships. Journal of Social and Clinical Psychology, 21(3), 256-286. https://doi.org/10.1521/jscp.21.3.256.22535 Go to original source...
    32. Lieberman, L. J., Haibach, P., & Schedlin, H. (2012). Physical education and children with CHARGE Syndrome: Research to practice. Journal of Visual Impairment and Blindness, 106(2) 106-119. https://doi.org/10.1177/0145482X1210600205 Go to original source...
    33. Lieberman, L. J. & Haibach, P. S. (2016). Gross Motor Development Curriculum: For Children With Visual Impairment. Louisville, KY: American Printing House for the Blind.
    34. Lieberman, L. J., & Kirk, T.N., & Haegele, J.A (2018). Physical education and transition planning experiences relating to recreation among adults who are deafblind: A recall analysis. Journal of Visual Impairment and Blindness, 112, 73-86. https://doi.org/10.1177/0145482X1811200107 Go to original source...
    35. Lieberman, L. J., & MacVicar, J. (2003). Play and Recreation Habits of Youth who are Deaf-blind. Journal of Visual Impairment and Blindness, 97(12), 755-768. https://doi.org/10.1177/0145482X0710100706 Go to original source...
    36. Lieberman, L. J., & Stuart, M.E. (2002). Self-determined recreation and leisure choices of individuals with deaf-blindness. Journal of Visual Impairment and Blindness, 96(10), 724-735. https://doi.org/10/1177/0145482X0209601004 Go to original source...
    37. Lieberman, L. J., Stuart, M. E., Hand, K., & Robinson, B. (2006). An investigation of the motivational effects of talking pedometers among children with visual impairments and deaf-blindness. Journal of Visual Impairment & Blindness, 100(12), 726-736. https://doi.org/10.1.1.837.4406 Go to original source...
    38. Linsenbigler, K., Petersen, S., & Lieberman, L. (2018). Barriers to physical activity for children with visual impairments: How far have we come and where do we still need to go? Palaestra, 32(1), 26-31.
    39. Lubans, D.R., Morgan, P.J., Cliff, D.P., Barnett, L.M., & Okely, A.D. (2010). Fundamental movement skills in children and adolescents: Review of associated health benefits. Sports Medicine, 40(12), 1019-1035. https://doi.org/10.2165/11536850- 000000000-00000 Go to original source... Go to PubMed...
    40. McHugh, E., & Pyfer, J. (1999). The development of rocking in children who are blind. Journal of Visual Impairment & Blindness, 93(2), 82-95. https://doi.org/10.1177/0145482X9909300203 Go to original source...
    41. Möller, C. (2021). Overview of balance and the vestibular system. In T.S. Hartshorne, M.A. Hefner, K.D. Blake (Eds.), CHARGE syndrome. (pp. 65-76). San Diego, CA: Plural Publishing.
    42. National Center on Deaf-Blindness (2018, October). The 2017 National Child Count of Children and Youth who are Deaf-Blind. Retrieved from https://nationaldb.org/reports/national-child-count-2017
    43. Pagon, R.A., Graham Jr., J.M., & Zonana, J.Y.S.L. (1981). Coloboma, congenital heart disease, and choanal atresia with multiple anomalies: CHARGE association. Journal of Pediatrics, 99, 223-227. https://doi.org/10.1016/s0022-3476(81)80454-4 Go to original source... Go to PubMed...
    44. Perkins, K., Columna, L., Lieberman, L.J., & Bailey, J. (2013). Parental perceptions toward physical activity for their children with visual impairments and blindness. Journal of Visual Impairments and Blindness, 107, 131-142. https://doi.org/10.1177/0145482X130700206 Go to original source...
    45. Perreault, M., Haibach-Beach, P., Lieberman, L., & Foster, E. (2021). Motor competence in children with CHARGE syndrome. Research and Practice for Persons with Severe Disabilities. https://doi.org/10.1177/1540796921998011 Go to original source... Go to PubMed...
    46. Perreault, M., Haibach-Beach, P., Lieberman, L., & Foster, E. (2020). Relationship between motor skills, balance, and physical activity in children with CHARGE syndrome. Journal of Visual Impairment & Blindness, 114(4), 315-324. https://doi.org/10.1177/0145482X20939469 Go to original source...
    47. Reed, E. S. (1991). Cognition as the cooperative appropriation of affordances. Ecological Psychology, 3(2), 135-158. https://doi.org/10.1207/s15326969eco0302_5 Go to original source...
    48. Robinson, L. E., D. F. Stodden, L. M. Barnett, V. P. Lopes, S. W. Logan, L. P. Rodrigues & E. D'Hondt (2015). Motor competence and its effect on positive developmental trajectories of health. Sports Medicine, 45(9), 1273-1284. https://doi.org/10.1007/s40279-015-0351-6 Go to original source... Go to PubMed...
    49. Salem-Hartshorne, N., & Jacob, S. (2005). Adaptive behavior in children with CHARGE syndrome. American Journal of Medicine Genetics A, 133A, 262-267. https://doi.org/10.1002/ajmg.a.30546 Go to original source... Go to PubMed...
    50. Silva, S. D., Flôres, F. S., Corrêa, S. L., Cordovil, R., & Copetti, F. (2017). Mother's perception of children's motor development in southern Brazil. Perceptual and Motor Skills, 124(1), 72-85. https://doi.org/10.1177/0031512516676203 Go to original source... Go to PubMed...
    51. Stuart, M.E., Lieberman, L., & Hand, K.E. (2006). Beliefs about physical activity among children who are visually impaired and their parents. Journal of Visual Impairment and Blindness, 100(4), 223-234. https://doi.org/10.1177/0145482X0610000405 Go to original source...
    52. Telama, R. (2009). Tracking of physical activity from childhood to adulthood: A review. Obesity Facts, 3, 187-196. https://doi.org/10.1159/ooo222244 Go to original source... Go to PubMed...
    53. Yao, W.A., Shapiro, D., & Liao, C. (2016). Parents motivation for participation in physical activity for children with impairments. European Journal of Adapted Physical Activity, 9(1), 15-26. https://doi.org/10.5507/euj.2016.002 Go to original source...
    54. Wachtel, L.E., Hartshorne, T.S., & Dailor, A.N. (2007). Psychiatric diagnoses and psychotropic medications in CHARGE syndrome: a pediatric survey. Journal of Developmental Physical Disability, 19, 471-483. https://doi.org/10.1007/s10882-007-9064-6 Go to original source...
    55. Zysset, A.E., Kakebeeke, T.H., Messerli-Bürgy, N., Meyer, A.H., Stülb, K., Leeger-Aschmann, … Jenni, O.G. (2018). The validity of parental reports on motor skills performance level in preschool children: A comparison with a standardized motor test. European Journal of Pediatrics, 177, 715-722. https://doi.org/10.1007/s00431-017-3078-6 Go to original source... Go to PubMed...

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