Bilişsel veya bedensel özel gereksinimi olan çocukların kardeşlerinin katılım düzeylerinin incelenmesi: anne perspektifi

Öz

Amaç: Özel gereksinimli bir çocuğa sahip olmak aileler için birçok sorunu beraberinde getirmekte aile yapısında, işleyişinde ve aile üyelerinin rollerinde değişiklikler yaratmaktadır. Çalışmanın amacı, bilişsel veya bedensel özel gereksinimli çocukların tipik gelişim gösteren kardeşlerinin katılım düzeyleri ile, katılım düzeylerini etkileyen bariyer ve destekleyicileri anne perspektifinden incelemekti. Yöntem: Çalışma bilişsel veya bedensel özel gereksinime sahip olan 8-17 yaş aralığındaki çocukların tipik gelişim gösteren, herhangi bir kronik rahatsızlığı olmayan kardeşleri ve anneleri ile gerçekleştirildi. Çalışma, bilişsel özel gereksinimli kardeşi olan grupta 30 (yaş ortalaması=12,5±2,25 yıl; 10 kadın, 20 erkek), bedensel özel gereksinimli kardeşi olan grupta 30 (yaş ortalaması=11,87±2,60 yıl; 16 kadın, 14 erkek) olmak üzere toplam 60 birey ile tamamlandı. Çalışmada sosyo-demografik bilgi formu ve katılımı değerlendirmek için Çocuklar ve Gençler İçin Katılım ve Çevre Ölçümü (PEM-CY) anketi kullanıldı. Bulgular: Bedensel özel gereksinimli kardeşi olan çocukların okul ve toplumsal ortamlardaki etkinliklerdeki katılım düzeyleri diğer grup ile karşılaştırıldığında daha fazla idi. Bu grupta yer alan bireyler toplumsal ortamda daha fazla çevresel desteğe sahip idi (p<0,05). Bilişsel özel gereksinimli kardeşe sahip çocukların okul ve toplumsal ortamlarda daha fazla çevresel bariyere sahip olduğu bulundu (p<0,05). Sonuç: Özel gereksinimli kardeşe sahip çocukların özellikle okul ve toplumsal ortamlara katılımlarının etkilendiği bulundu. Rehabilitasyon hizmeti veren profesyonellerin özel gereksinimli kardeşe sahip çocukları katılım açısından değerlendirmelerinin ve bu çocukların ev, okul ve toplumsal ortamlardaki katılımlarını arttırmaya yönelik müdahale stratejilerini geliştirmelerinin önemli olduğunu düşünmekteyiz.

Anahtar Kelimeler

• Katılım
• Kardeş
• Çevre
• Çocuk
• Engellilik

Investigation of participation levels of siblings of children with cognitive or physical special needs: a mother's perspective

Öz

Purpose: Having a child with special needs brings along many problems for families and creates changes in family structure, functioning and roles of family members. The aim of the study was to examine the participation levels of siblings of children with cognitive or physical special needs who show typical development, and the barriers and supporters that affect participation levels from the perspective of the mother. Methods: The study was carried out with the siblings and mothers of children aged 8-17 who have cognitive or physical special needs, who show typical development and do not have any chronic diseases. The study was conducted in 30 (mean age=12.5±2.25 years; 10 female, 20 male) siblings in the group with cognitive special needs siblings and 30 in the group with physical special needs siblings (mean age=11.87±2.60 years; 16 female, 14 male) with a total of 60 individuals. In the study, a socio-demographic information form and Participation and Environment Measure for Children and Youth (PEM-CY) questionnaire were used to assess participation. Results: The participation levels of children with physical special needs sibling in school and community settings were higher when compared to the other group. Individuals in this group had more environmental support in the social environment (p<0.05). It was found that children with siblings with cognitive special needs have more environmental barriers in school and community settings (p<0.05). Conclusion: It was found that the participation of children with special needs sibling especially in school and social environments was affected. It is important for professionals who provide rehabilitation services to evaluate children with special needs siblings in terms of participation and to develop intervention strategies to increase the participation of these children at home, school and social settings.

Anahtar Kelimeler

• Keywords: Participation
• Siblings
• Environment
• Children
• Disability

Kaynakça

1. Dyke P, Mulroy S, Leonard H. Siblings of children with disabilities: challenges and opportunities. Acta Paediat. 2009;98:23-24
2. Dunn J. Sibling influences on childhood development. J Child Psychol Psychiatry. 1988;29:119-127.
3. Çelik EM, Daskapan A, Topcu Z. Physical fitness, physical activity, psychosocial status and quality of life of adolescent siblings of neurologically disabled children. Balt J Health Phys Act. 2018;10:27-37.
4. Naylor A, Prescott P. Invisible children? The need for support groups for siblings of disabled children. Br J Spec Educ. 2004;31:199-206.
5. Aytekin C, Studies A. Siblings of disabled children: a general overview in terms of academic studies. Int J Res Sci Innov Appl Sci. 2016;16:522.
6. Aksoy AB, Bercin Yildirim G. A study of the relationships and acknowledgement of non-disabled children with disabled siblings. Educ Sci Theory Pract. 2008;8:769-779.
7. Meltzer A, Kramer J. Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities. Disabil Soc. 2016;31:17-32.
8. Bågenholm A, Gillberg C. Psychosocial effects on siblings of children with autism and mental retardation: A population‐based study. J Intellect Disabil Res. 1991;35:291-307.

9. Giallo R, Roberts R, Emerson E, et al. The emotional and behavioural functioning of siblings of children with special health care needs across childhood. Res Dev Disabil. 2014;35:814-825.
10. Ross P, Cuskelly M. Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. J Intellect Dev Disabil. 2006;31:77-86.
11. Simeonsson RJ, Lee A. The international classification of functioning, disability and health-children and youth. Implementing a worldwide classification of functioning and disability. In: An Emerging Approach for Education and Care. Castro S, Palikara O, eds. 2017;5-22.
12. Coster W, Bedell G, Law M, et al. Psychometric evaluation of the participation and environment measure for children and youth. Dev Med Chil Neurol. 2011;53:1030-1037.
13. Kaya Kara O, Turker D, Kara K, et al. Psychometric properties of the Turkish version of participation and environment measure for children and youth. Child Care Health Dev. 2020;46:711-722.
14. Steinhardt F, Ullenhag A, Jahnsen R, et al. Perceived facilitators and barriers for participation in leisure activities in children with disabilities: perspectives of children, parents and professionals. Scand J Occup. 2021;28:121-135.
15. Chien C-W, Rodger S, Copley J, et al. Comparative content review of children's participation measures using the international classification of functioning, disability and health–children and youth. Arch Phys Med Rehabil. 2014;95:141-152.
16. Hoogsteen L, Woodgate R. Can I play? A concept analysis of participation in children with disabilities. Phys Occup Ther Pediatr. 2010;30:325-339.
17. World Health Organization. International Classification of Functioning, Disability, and Health: Children & Youth Version: ICF-CY: World Health Organization; 2007.
18. Şahin S, Şahin R, Kara ÖK, et al. The effect of COVID 19 pandemic on the participation of children with special needs. Intl J Disabil Dev Educ. 2022;1-10.
19. Axelsson AK, Granlund M, Wilder J. Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Child Care Health Dev.2013;39:523-534.
20. Harding J, Harding K, Jamieson P, et al. Children with disabilities' perceptions of activity participation and environments: A pilot study. Can J Occup Ther. 2009;76:133-144.
21. Law M, Anaby D, Teplicky R, et al. Participation in the home environment among children and youth with and without disabilities. Br J Occup Ther. 2013;76:58-66.
22. Hong DG, Jeong Y. Difference in home participation patterns and environmental factors between Korean children with and without disabilities. Disabil Rehabil. 2022;44:6340-6347.
23. Woodgate RL, Edwards M, Ripat JD, et al. Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child Care Health Dev. 2016;42:504-512.
24. Kale M, Siğirtmaç AD. The participation of children in caregiving of their siblings with special needs and peer relationship in rural Turkey. Early Child Dev Care. 2021;191:1392-1400.
25. Vermaes IP, Van Susante AM, van Bakel HJ. Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis. J Pediatr Psychol. 2012;37:166-184.
26. Gan LL, Lum A, Wakefield CE, et al. School experiences of siblings of children with chronic illness: a systematic literature review. J Pediatr Nurs. 2017;33:23-32.
27. Law PC, Cuskelly M, Carroll A. Young people's perceptions of family, peer, and school connectedness and their impact on adjustment. J Psychol Couns Sch. 2013;23:115-140.
28. Hastings RP. Brief report: Behavioral adjustment of siblings of children with autism. J Autism Dev Disord. 2003;33:99-104.
29. Tudor ME, Rankin J, Lerner M. A model of family and child functioning in siblings of youth with autism spectrum disorder. J Autism Dev Disord. 2018;48:1210-1227.
30. Dekker MC, Koot HM, Ende JVD, et al. Emotional and behavioral problems in children and adolescents with and without intellectual disability. J Child Psychol Psychiatry. 2002;43:1087-1098.
31. Chien CW, Lin CY. Community participation of school-age children: who is at risk of restricted participation?. Phys Occup Ther Pediatr. 2021;41:447-463.
32. Baksjøberget PE, Nyquist A, Moser T, et al. Having fun and staying active! Children with disabilities and participation in physical activity: a follow-up study. Phys Occup Ther Pediatr. 2017;37:347-358.
33. Kang LJ, Hsieh MC, Liao HF, et al. Environmental barriers to participation of preschool children with and without physical disabilities. Int J Environ Res Public Health. 2017;14:518.
34. Eisenberg N, Eggum-Wilkens ND, Spinrad TL. The development of prosocial behavior. In: The Oxford handbook of prosocial behavior A. Schroeder A, Graziano WG, eds. Oxford University Press. 2015:114–136.