Otizmli Çocuklarda Topluluk Temelli Serbest Zaman Katılımında Algilanan Damgalama: Türk Ebeveyn Perspektifi

Abstract

Bu araştırmada, Otizm Spektrum Bozukluğu (OSB) olan çocukların, topluluk temelli serbest zaman aktivitelerine (TSZA) katılımında algılanan damgalamaları ebeveyn görüşleri aracılığıyla incelenmiştir. Araştırmanın çalışma grubunu 7-18 yaş arasında çocuğu olan 10 ebeveyn oluşturmaktadır. Nitel araştırma yöntemleri ile tasarlanan araştırmada, Goffman (1963)’ın ‘damgalama teorisi’nden yararlanılarak kavramsal çerçeve oluşturulmuştur. Veriler yarı yapılandırılmış görüşme formu hazırlanarak yüz yüze görüşme yöntemi ile toplanmıştır. Verilerin analizinde tematik analiz yöntemi kullanılmıştır. Bu kapsamda, önemli bir ihtiyaç, damgalamanın tonları, ebeveynliğin doğası, iki farklı taraf’ ve öğrenilmiş yalnızlık temaları oluşturulmuştur. Araştırma bulgularına göre, ebeveynlerin OSB’li çocuklarının TSZA katılımlarına oldukça önem verdikleri görülmektedir. TSZA OSB’li çocuklar için etkili bir sosyalleşme aracı olması sebebiyle ebeveynleri tarafından ciddi bir gereksinim olarak benimsenmiştir. TSZA katılımı sırasında OSB’li çocuklar pek çok damgalamaya maruz kalmaktadır ve ebeveynleri bu durumlar karşısında genel olarak sert tepkiler verebilmektedir. Algılanan damgalamalar, ebeveynler ve OSB’li bireylerin TSZA katılımlarını olumsuz olarak etkilemektedir. Sonuç olarak; OSB’li çocuklarda TSZA katılımının önemli bir ihtiyaç olduğu, katılımı etkileyen olumsuz tutum ve davranışların azaltılması ile birlikte katılım konusunda daha fazla çocuğun bu tür serbest zaman katılım deneyimleri yaşayacağı söylenebilir.

Keywords

• Otizm
• Damgalama
• Topluluk temelli serbest zaman
• Ebeveyn
• Çocuk

Perceived Stigma in Community-Based Leisure Activity Participation of Children With Autism: Perspective from Turkish Parents

Abstract

In this research, the perceived stigma during community-based leisure activity (CBLA) participation of children with autism spectrum disorder (ASD) was investigated from the perspective of parents. The study group for the research comprised 10 parents of children aged 7-18 years. In the research designed with qualitative research methods, the conceptual framework comprised Goffman’s (1963) ‘stigma theory’. Data were collected with the face-to-face interview method using a semi-structured interview form. Analysis of data used the thematic analysis method. Within this scope, themes comprised an important necessity, tones of stigma, nature of being a parent, two different sides and learned loneliness. According to the research findings, parents of children with ASD appeared to attach great importance to participation in CBLA. Due to CBLA participation being an effective socialization tool for children with ASD, parents saw it as a serious necessity. During participation in CBLA, children with ASD were exposed to many types of stigma and parents generally provided strong reactions to this situation. Perceived stigma negatively affected the CBLA participation of parents and individuals with ASD. In conclusion, CBLA participation is an important need for children with ASD, and by reducing the negative attitudes and behaviors affecting participation more children will experience participation in this type of leisure activity.

Keywords

• Autism
• Stigma
• Community based leisure
• Parents
• Children

References

1. Aitchison, C. (2003). From leisure and disability to disability leisure: Developing data, definitions and discourses. Disability & Society, 18(7), 955-969. https://doi.org/10.1080/0968759032000127353
2. Anastasiou, D., & Kauffman, J. M. (2012). Disability as cultural difference: Implications for special education. Remedial and special education, 33(3), 139-149. https://doi.org/10.1177/0741932510383163
3. Armstrong, M., Sharaievska, I., Crowe, B. M., & Gagnon, R. J. (2022). Experiences in outdoor recreation among individuals with developmental disabilities: Benefits, constraints, and facilitators. Journal of Intellectual & Developmental Disability, 2022, 1-12. https://doi.org/10.3109/13668250.2022.2104449
4. Batum, S., & Aydın, A. (2021). Otizm spektrum bozukluğuna yönelik toplumsal tutumlar ölçeğinin Türkçe’ye uyarlanması. Dumlupınar Üniversitesi Eğitim Bilimleri Enstitüsü Dergisi, 5(2), 1-24.
5. Bedini, L. A. (2000). " Just sit down so we can talk:" perceived stigma and community recreation pursuits of people with disabilities. Therapeutic Recreation Journal, 34(1), 55-68.
6. Bumin, G., Günal, A., & Tükel, Ş. (2008). Anxiety, depression and quality of life in mothers of disabled children. SDÜ Tıp Fakültesi Dergisi, 15(1), 6-11.
7. Burcu, E. (2011). Türkiye'deki engelli bireylere ilişkin kültürel tanımlamalar: Ankara örneği. Hacettepe Üniversitesi Edebiyat Fakültesi Dergisi, 28(1), 37-54.
8. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350-362. https://doi.org/10.1007/s10803-008-0632-0

9. Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153-163. https://doi.org/10.3109/01612840.2015.1116030
10. Botha, M., Dibb, B., & Frost, D. M. (2022). " Autism is me": an investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37(3), 427-453. https://doi.org/10.1080/09687599.2020.1822782
11. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
12. Brewster, S., & Coleyshaw, L. (2011). Participation or exclusion? Perspectives of pupils with autistic spectrum disorders on their participation in leisure activities. British Journal of Learning Disabilities, 39(4), 284-291. https://doi.org/10.1111/j.1468-3156.2010.00665.x
13. Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266-277. https://doi.org/10.1007/s10803-011-1241-x
14. Coleman Brown, L. (2013). Stigma: An enigma demystified. The Disability Studies Reader, 147-162. https://doi.org/10.4324/9780203077887-19
15. Corbin, J., & Strauss, A. (2008). Techniques and procedures for developing grounded theory. Basics of Qualitative Research (3rd ed). Thousand Oaks, CA, USA: Sage.
16. Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental illness. World Psychiatry, 1(1), 16-20. Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage publications.
17. Creswell, J. W. (2018). Qualitative inquiry and research design: Choosing among five approaches. Sage Publications.
18. Çağlar, S. (2012). Engellilerin erişebilirlik hakkı ve Türkiye’de erişebilirlikleri. Ankara Üniversitesi Hukuk Fakültesi Dergisi, 61(2), 541-598. https://doi.org/10.1501/Hukfak_0000001666
19. Doğusan, S., & Koçak, F. (2019). Women long-distance runners’ experiences in serious leisure participation with respect to self-determination theory. Sportif Bakış: Spor ve Eğitim Bilimleri Dergisi, 6(2), 230-249.
20. Driver B., Brown P. J., & Peterson G. (1991). Benefits of Leisure. Pennsylvania: Venture Publishing Inc.
21. Ellen Selman, L., Fox, F., Aabe, N., Turner, K., Rai, D., & Redwood, S. (2018). ‘You are labelled by your children’s disability’–a community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom. Ethnicity & Health, 23(7), 781-796. https://doi.org/10.1080/13557858.2017.1294663
22. Eversole, M., Collins, D. M., Karmarkar, A., Colton, L., Quinn, J. P., Karsbaek, R., ..., & Hilton, C. L. (2016). Leisure activity enjoyment of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 10-20. https://doi.org/10.1007/s10803-015-2529-z
23. Fridolina, E. P., Deliana, S. M., & Pranoto, Y. K. S. (2020). The training of self-help eating ability of the autism spectrum disorder student using social reinforcement intervention in early childhood. Journal of Primary Education, 9(1), 85-91. https://doi.org/10.15294/jpe.v11i3.36055
24. Goffman, E. (1963). Stigma. Englewood Cliffs, New Jersey: Prentice-Hall.
25. Guba, E. G., & Lincoln, Y. S. (1982). Epistemological and methodological bases of naturalistic inquiry. Educational Communication and Technology Journal, 30(4), 233–252. https://doi.org/10.1007/BF02765185
26. Güngörmüş, H. A., Yenel, F., & Gürbüz, B. (2014). Bireyleri rekreasyonel egzersize güdüleyen faktörlerin belirlenmesi: Demografik farklılıklar. International Journal of Human Sciences, 11(1), 373-386. https://doi.org/10.14687/ijhs.v11i1.2165
27. Gürbüz, B., & Henderson, K. (2014). Leisure activity preferences and constraints: Perspectives from Turkey. World Leisure Journal, 56(4), 300-316. https://doi.org/10.1080/16078055.2014.958195
28. Gürkan, R. K., & Koçak, F. (2021). Double punch to the better than nothing: physical activity participation of adolescents with autism spectrum disorder. International Journal of Developmental Disabilities, 2021, 1-13. https://doi.org/10.1080/20473869.2021.2009636
29. Gürkan, R. K., Koçak, F., & Başar A. (2021) Investigation on the relationship between the leisure satisfaction and psychological well-being in disabled athletes. International Journal of Sport, Exercise & Training Sciences, 7(2), 73–83. https://doi.org/10.18826/useeabd.890800
30. Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health & Illness, 15(1), 102-120. https://doi.org/10.1111/1467-9566.ep11343802
31. Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734-749. https://doi.org/10.1111/1467-9566.00316
32. Hacıibrahimoğlu, B. Y., & Kargın, T. (2017). Determining the Difficulties Children with Special Needs Experience during the Transition to Primary School. Educational Sciences: Theory & Practice, 17(5), 1487-1524. https://doi.org/10.12738/estp.2017.5.0135
33. Healy, S., Msetfi, R., & Gallagher, S. (2013). ‘Happy and a bit nervous’: The experiences of children with autism in physical education. British Journal of Learning Disabilities, 41, 222–228. https://doi.org/10.1111/bld.12053
34. Hebert, E. B., & Koulouglioti, C. (2010). Parental beliefs about cause and course of their child's autism and outcomes of their beliefs: A review of the literature. Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. https://doi.org/10.3109/01460862.2010.498331
35. İpek, E. (2020). The costs of disability in Turkey. Journal of Family and Economic Issues, 41(2), 229-237. https://doi.org/10.1007/s10834-019-09642-2
36. Jones, S. C., Akram, M., Gordon, C. S., Murphy, N., & Sharkie, F. (2021). Autism in Australia: Community knowledge and autistic people’s experiences. Journal of Autism and Developmental Disorders, 51(10), 3677-3689. https://doi.org/10.1007/s10803-020-04819-3
37. Jones, S. C., Gordon, C. S., Akram, M., Murphy, N., & Sharkie, F. (2022). Inclusion, exclusion and isolation of autistic people: Community attitudes and autistic people’s experiences. Journal of Autism and Developmental Disorders, 52(3), 1131-1142. https://doi.org/10.1007/s10803-021-04998-7
38. Kara, F. M., & Özdedeoğlu, B. (2017). Examination of relationship between leisure boredom and leisure constraints. Sport Sciences, 12(3), 24-36. https://doi.org/10.12739/nwsa.2017.12.3.2b0109
39. Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942-953. https://doi.org/10.1007/s10803-015-2637-9
40. Koçak, F. (2017). Leisure constraints and facilitators: Perspectives from Turkey. European Journal of Physical Education and Sport Science, 3(10), 32-47. https://doi.org/10.5281/zenodo.852540
41. Ku, B., & Haegele, J. A. (2022). Understanding parental physical activity behaviours in parents of children with disabilities: An expanded theory of planned behaviour approach. Journal of Intellectual & Developmental Disability, 2022, 1-10. https://doi.org/10.3109/13668250.2022.2104448
42. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. https://doi.org/10.1146/annurev.soc.27.1.363
43. Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509), 528–529. https://doi.org/10.1016/S0140-6736(06)68184-1
44. MacKay, G. (2002). The disappearance of disability? Thoughts on a changing culture. British Journal of Special Education, 29(4), 159-163. https://doi.org/10.1111/1467-8527.00263
45. McMahon, J., Wiltshire, G. E., McGannon, K. R., & Rayner, C. (2020). Children with autism in a sport and physical activity context: a collaborative autoethnography by two parents outlining their experiences. Sport, Education and Society, 25(9), 1002-1014. https://doi.org/10.1080/13573322.2019.1680535
46. Merriam, S. B., & Tisdell, E. J. (2015). Qualitative research: A guide to design and implementation. John Wiley & Sons.
47. Mihaila, I., Handen, B. L., Christian, B. T., & Hartley, S. L. 2020. Leisure activity in middle‐aged adults with Down syndrome: Initiators, social partners, settings and barriers. Journal of Applied Research in Intellectual Disabilities, 33(5), 865-875. https://doi.org/10.1111/jar.12706
48. Miles, M. B. and Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed). Thousand Oaks, CA: Sage.
49. Mitter, N., Ali, A., & Scior, K. (2019). Stigma experienced by families of individuals with intellectual disabilities and autism: A systematic review. Research in Developmental Disabilities, 89, 10-21. https://doi.org/10.1016/j.ridd.2019.03.001
50. Mount, N., & Dillon, G. (2014). Parents’ experiences of living with an adolescent diagnosed with an autism spectrum disorder. Educational & Child Psychology, 31(4), 72-81. https://doi.org/10.53841/bpsecp.2014.31.4.72
51. Navarro, R. T., Tschöke Santana, D., & Rechia, S. (2018). Public leisure space and community-based action. Leisure Studies, 37(6), 747-762. https://doi.org/10.1080/02614367.2018.1535613
52. Ng, C. K., Lam, S. H., Tsang, S. T., Yuen, C., & Chien, C. W. (2020). The relationship between affiliate stigma in parents of children with autism spectrum disorder and their children’s activity participation. International Journal of Environmental Research and Public Health, 17(5), 1799. https://doi.org/10.3390/ijerph17051799
53. Nieto, C., Murillo, E., Belinchón, M., Giménez, A., Saldaña, D., Martínez, M. Á., & Frontera, M. (2015). Supporting people with autism spectrum disorders in leisure time: Impact of an university volunteer program, and related factors. Anales de Psicología/Annals of Psychology, 31(1), 145-154. https://doi.org/10.6018/analesps.31.1.166591
54. Obrusnikova, I., & Miccinello, D. L. (2012). Parent perceptions of factors influencing after-school physical activity of children with autism spectrum disorders. Adapted Physical Activity Quarterly, 29(1), 63-80. https://doi.org/10.1123/apaq.29.1.63
55. Paananen, J., Lindholm, C., Stevanovic, M., & Weiste, E. (2020). Tensions and Paradoxes of Stigma: Discussing Stigma in Mental Health Rehabilitation. International Journal of Environmental Research and Public Health, 17(16), 1-18. https://doi.org/10.3390/ijerph17165943
56. Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2021). Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: a scoping review. Review Journal of Autism and Developmental Disorders, 8(2), 195-212. https://doi.org/10.1007/s40489-020-00210-1
57. Riggins, M. S., Kankipati, P., Oyster, M. L., Cooper, R. A., & Boninger, M. L. (2011). The relationship between quality of life and change in mobility 1 year postinjury in individuals with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 92(7), 1027-1033. https://doi.org/10.1016/j.apmr.2011.02.010
58. Sarıçam, H., Deveci, M., & Ahmetoğlu, E. (2020). The examination of hope, intolerance of uncertainty and resilience levels in parents having disabled children. Global Journal of Psychology Research: New Trends and Issues, 10(1), 118-131. https://doi.org/10.18844/gjpr.v10i1.4398
59. Sarol, H., & Çimen, Z. (2015). The effects of adapted recreational physical activity on the life quality of individuals with autism. The Anthropologist, 21(3), 522-527. https://doi.org/10.1080/09720073.2015.11891842
60. Sarol, H. (2017). Examination of the constraints and facilitators to physical activity participation of individuals. Journal of Human Sciences, 14(4), 4354-4364. https://doi.org/10.14687/jhs.v14i4.5121
61. Sarol, H., Gürkan, R.K., & Gürbüz, B. (2022). The road to championship: An example of an individual with autism spectrum disorder. Baltic Journal of Health and Physical Activity, 14(3), 1-17. https://doi.org/10.29359/BJHPA.14.3.02
62. Uğurlu, A. (2021). Investigating the relationship between loneliness and alienation levels of university students according to some variables. Akdeniz Spor Bilimleri Dergisi, 4(2), 308-319. https://doi.org/10.38021/asbid.976884
63. Uljarević, M., Frazier, T. W., Jo, B., Phillips, J. M., Billingham, W., Cooper, M. N., & Hardan, A. Y. (2021). Relationship between social motivation in children with autism spectrum disorder and their parents. Frontiers in Neuroscience, 15(660330), 1-9. https://doi.org/10.3389/fnins.2021.660330.
64. Yin, R. K. (2003). Case study research: Design and methods. (3rd ed., Vol. 5). Thousand Oaks, CA: Sage.
65. West, P. C. (1984). Social stigma and community recreation participation by the mentally and physically handicapped. Therapeutic Recreation Journal, 18(1), 40-49.