Down sendromlu adölesanlarla aktiviteye katılım ve yaşam kalitesi

Abstract

Amaç: Bu çalışmanın amacı, Down Sendromlu adölesanların aktivitelere katılımlarının yaşam kalitesiyle birlikte değerlendirilmesi ve normal gelişimli adölesanlarla karşılaştırılmasıdır.

Yöntem: Çalışmaya 30 adölesan dahil edildi. Bunlardan Down Sendromlu olan 15 olgu çalışma grubuna, normal gelişimli olan 15 olgu ise kontrol grubuna alındı. Aktivitelere katılımı değerlendirmek için Çocuk ve Ergen Katılım Ölçeği, yaşam kalitesini değerlendirmek için Çocuklar için Yaşam Kalitesi Ölçeği (13-18 yaş) ve kaba motor fonksiyonları değerlendirmek için Kaba Motor Fonksiyon Ölçeği-88 kullanıldı.

Bulgular: Kontrol grubundaki adölesanların kaba motor fonksiyonları, çalışma grubundaki adölesanlara kıyasla daha gelişmiş durumdaydı (p<0,05). Kontrol grubundaki adölesanların yaşam kalitesi fiziksel ve psikososyal yönden çalışma grubundaki olgulardan daha yüksekti (p<0,05). Çalışma grubundaki adölesanların toplumsal ve sosyal yaşama katılımları kontrol grubundaki adölesanlardan daha yüksekti (p<0,05). Kontrol grubundaki adölesanların ise ev içi katılımı daha yüksekti (p<0,05).

Sonuç: Down sendromlu adölesanların aktivitelere katılımı ve yaşam kalitesi, genel olarak normal gelişimli adölesanlara kıyasla daha düşüktür.

Keywords

• Down Sendromu
• Motor Aktivite
• Toplumsal Katılım
• Yaşam Kalitesi

Participation in activity and quality of life in adolescents with Down Syndrome

Abstract

Purpose: The aim of this study was to evaluate the participation of adolescents with Down syndrome in activities together with their quality of life and to compare them with adolescents with normal development.

Methods: Thirty adolescents were included in the study. Of these, 15 cases with Down syndrome were included in the study group, and 15 cases with normal development were included in the control group. The Child and Adolescent Participation Scale was used to assess participation in activities, the Pediatric Quality of Life Inventory (13-18 years) to evaluate the quality of life, and the Gross Motor Function Scale-88 to evaluate gross motor functions.

Results: The gross motor functions of adolescents in the control group were more developed compared to adolescents in the study group (p<0.05). The quality of life of the adolescents in the control group was higher in physical and psychosocial aspects than the adolescents in the study group (p<0.05). Participation in the community and social life of the subjects in the study group was higher than the adolescents in the control group (p<0.05). On the other hand, participation at home of adolescents in the control group was higher (p <0.05).

Conclusion: Participation in the activities and quality of life of adolescents with Down Syndrome is generally lower than adolescents with normal development.

Keywords

• Down Syndrome
• Motor Activity
• Community Participation
• Quality of Life

References

1. 1. Cunningham F, Kenneth J. Leveno, Steven L. Bloom, John C. Hauth, Dwight J. Rouse, Catherine Y. Spong. “Antepartum”, Williams Obstetrics, McGraw-Hill Education/Medical New York, 2018, s.267-270.
2. 2. Bittles AH, Bower C, Hussain R, Glasson EJ. The four ages of Down syndrome. Eur J Publ Health 2006;17:221-225.
3. 3. Neece CL, Kraemer BR, Blacher J. Transition satisfaction and family well being among parents of young adutls with severe intellectual disability. Intellect Dev Disabil 2009;49:31-43.
4. 4. Kiefer RA. An integrative review of the concept of well-being. Holist Nurs Pract 2008;22:244-254.
5. 5. van Naarden Braun K, Yeargin-Allsopp M, Lollar D. Activity limitations among young adults with developmental disabilities: a population-based follow-up study. Res Dev Disabil 2009;30:179-191.
6. 6. Foley KR, Dyke P, Girdler S. Young adults with intellectual disability transitioning from school to post-school: a literatüre review framed within the ICF. Disabil Rehabil 2012;34:1747-1764.
7. 7. Carr J. The everyday life of adults with Down syndrome. J Appl Res Intellect Disabil 2008;21:389-397.
8. 8. Docherty J, Reid K. ‘What’s the next stage?’ Mothers of young adults with Down syndrome explore the path to independence: a qualitative investigation. J Appl Res Intellect Disabil 2009;22:458-467.

9. 9. Oates A, Bebbington A, Bourke J. Leisure participation for school-aged children with Down syndrome. Disabil Rehabil 2011;33:1880-1889.
10. 10. Lippold T, Burns J. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability. J Intellect Disabil Res 2009;53:463473.
11. 11. Russell D.J, Rosenbaum PL, Cadman DT, Gowland C, Hardy S, Jarvis S. The gross motor function measure: a means to evaluate the effects of physical therapy. Dev Med Child Neurol 1989;31:341-352.
12. 12. Seyhan K, Kerem Günel M. Spastik CP’li çocuklarda erken dönem kliniksel denge değerlendirme sonuçlarının incelenmesi. Hacettepe University Facullty of Health Sciences Journal. No supply 1 (2015).
13. 13. Şık BY, Çekmece FÇ, Dursun N, Dursun E, Balıkçı E, Altunkanat Z, Gülcü VMA. (2012). Hippoterapi serebral palsili çocukların rehabilitasyonunda yararlı mıdır? Turkiye Klinikleri Journal of Medical Sciences 2012:32: 601-608.
14. 14. Varni JW, Michael S, Cheryl AR. The PedsQL™: measurement model for the pediatric quality of life inventory. Medical Care 1999;126-139.
15. 15. Memik NC, Agaoglu B, Coskun A, Uneri OS, Karakaya I. The validity and reliability of the Turkish Pediatric Quality of Life Inventory for children 13-18 years old. Turk Psikiyatri Derg 2007;18:353.
16. 16. McDougall J, Bedell G, Wright V. The youth report version of the Child and Adolescent Scale of Participation (CASP): Assessment of psychometric properties and comparison with parent report. Child Care Health Dev 2013;39:512-522.
17. 17. Sümbüloğlu K, Sümbüloğlu V. Biyoistatistik, Hatiboğlu Yayınları, Ankara, 2010, s.102-135.
18. 18. Van Gameren-Oosterom HB, Van Dommelen P, Oudesluys-Murphy AM, Buitendijk SE, Van Buuren S, Van Wouwe JP. Healthy growth in children with Down syndrome. PLoS One 2012;7:310-379.
19. 19. Carr J. The everyday life of adults with Down syndrome. J Appl Res Intellect Disabil 2008;21:389-397.
20. 20. Pitetti KH, Fernhall B. Comparing run performance of adolescents with mental retardation, with and without Down syndrome. Adapt Phys Activ Q 2004;21:219-228.
21. 21. Jones DB. ‘Denied from a lot of places’ barriers to participation in community recreation programs encountered by children with disabilities in Maine: perspectives of parents. Leisure/Loisir: The Journal of CALS 2003;28: 49-69.
22. 22. Menear KS. Parents’ perceptions of health and physical activity needs of children with Down syndrome. Downs Syndr Res Pract 2007;12:60-68.
23. 23. Van Gameren-Oosterom HBM, Fekkes M, Buitendijk SE, Mohangoo AD, Bruil J. Development, problem behavior, and quality of life in a population based sample of eight-year-old children with Down syndrome. Plos One 2011;6:218-279.
24. 24. Dabrowska A, Pisula E. Parenting stress and coping styles in mothers and fathers of pre‐school children with autism and Down syndrome. JIDR 2010;54:266-280.
25. 25. Bentley GF, Goodred JK, Jago R, Sebire SJ, Lucas PJ, Fox KR, Turner, KM. Parents’ views on child physical activity and their implications for physical activity parenting interventions: a qualitative study. BMC Pediatrics 2012;12:1-9.
26. 26. Taymoori P, Rhodes RE, Berry TR. Application of a social cognitive model in explaining physical activity in Iranian female adolescents. Health Educ Res 2010; 25:257-267.
27. 27. Menear KS. Parents’ perceptions of health and physical activity needs of children with Down syndrome. Downs Syndr Res Pract 2007;12:60-68.
28. 28. Mahy J, Shields N, Taylor N, Dodd KJ. Identifying facilitators and barriers to phsyical activity for adults with Down syndrome. JIDR 2010;54:795-805.
29. 29. Barr M, Shields N. Identifying the barriers and facilitators to participation in physical activity for children with Down syndrome. JIDR 2011;55:1020-1033.
30. 30. Cebula KR, Moore DG, Wishart JG. Social cognition in children with Down's syndrome: challenges to research and theory building. JIDR 2010;54:113-134.
31. 31. Pangelinan MM, Zhang G, VanMeter JW, Clark JE, Hatfield BD, Haufler AJ. Beyond age and gender: relationships between cortical and subcortical brain volume and cognitive-motor abilities in school-age children. Neuroimage 2011;54:3093-3100.
32. 32. Chitty LS, Wright D, Hill M, Verhoef TI, Daley R, Lewis C, Morris S. Uptake, outcomes, and costs of implementing non-invasive prenatal testing for Down’s syndrome into NHS maternity care: prospective cohort study in eight diverse maternity units. BMJ 2016;354:342-346.
33. 33. Næss KAB, Nygaard E, Ostad J, Dolva AS, Lyster SAH. The profile of social functioning in children with Down syndrome. Disabil Rehabil 2017;39:1320-1331.
34. 34. Zigman WB. Atypical aging in Down syndrome. Dev Disabil Res Rev 2013;18:51-67.
35. 35. Hammal D, Jarvis SN, Colver AF. Participation of children with cerebral palsy is influenced by where they live. Dev Med Child Neurol 2004;49: 450-457.