COVID-19 Pandemisinde Özel Gereksinimli Çocuklar ve Ebeveyn Tükenmişliği

Öz

Amaç: COVID-19 enfeksiyonu yaşamın her alanını etkilemiştir. Bununla birlikte toplumun bazı kesimleri pandemi ve sonuçlarından daha fazla etkilenmiştir. Özel Gereksinimli Çocuklara (ÖGÇ) sahip aileler de şüphesiz pandemiden daha fazla etkilenen gruplar içerisinde yer almıştır. Çalışmamızda; ÖGÇ’lerin ve ebeveynlerinin pandemide özel eğitim merkezlerinin kapanma döneminde özel eğitim gereksinimleri ile ilgili sorun yaşayıp yaşamadıklarını saptamak, özel eğitime ara verilme sürecinin ebeveyn-çocuk ilişkisi, ebeveynlerin tükenmişlik düzeyi ve ÖGÇ’nin gelişim süreci ile ilişkisini incelemek amaçlanmıştır. Gereç ve Yöntem: Çalışmamıza 2020-2021 eğitim öğretim döneminde Kocaeli ilinde özel eğitim ve rehabilitasyon merkezlerine kayıtlı, 0-18 yaş arası çocuğu olan ebeveynler alınmıştır. Ebeveynlere; sosyodemografik veri formu, Maslach Tükenmişlik Ölçeği ve Ebeveyn Çocuk İlişkisi Ölçeği verilmiştir. Bulgular: Çalışma sonucunda; çocukların özel eğitim aldığı tanı ve ebeveyn tükenmişliği arasında ilişki olduğu, tükenmişliğin OSB tanılı çocuğu olan ailelerde daha yüksek olduğu gözlenmiştir. Tükenmişlik puanı yüksek olan ailelerin çocuklarının gelişimde pandemi döneminde gerileme olması dikkat çekmiştir. Annesi çalışan, ebeveyni evden çalışmayan, ailenin aylık geliri 4501 TL ve üstü olan, özel eğitime gitmiş olduğu toplam süre 0-24 ay arası olan grupta çocukların gelişiminde ilerlemenin daha fazla olduğu saptanmıştır. 11 yaş ve altı çocuğu olan ebeveynlerin çocuklarıyla anlamlı oranda daha fazla olumlu ilişkisinin olduğu gözlenmiştir. Sonuç: COVID-19 pandemisinde özel eğitim merkezlerinin kapanması, sosyal desteğin azalması, çocukları ile sürekli bir arada olmaları gibi nedenler ile ebeveynlere binen yükün artması ÖGÇ olan ailelerin tükenmişlik düzeyini artmasında rol oynamış olabilir. Pandemi döneminde ÖGÇ’lerin gelişim sürecini ve ailelerin ruhsal durumunu takip etmek, sorun alanlarını tespit etmek ve uygun destek programlarının hazırlanmasında önemli olacaktır.

Anahtar Kelimeler

• Çocuk
• özel gereksinim
• özel eğitim
• tükenmişlik
• ebeveyn-çocuk ilişkisi

Children with special educational needs and parental burnout during the pandemic lockdown period

Öz

Objective: This study aimed to investigate whether children with special needs and their parents had problems with special education needs during the lockdown, and to examine the relationship between the special education process and the parent-child relationship, the level of burnout of parents. Material and Methods: Our study included 283 parents with children registered to a special education and rehabilitation centers in Kocaeli province of Turkey during the 2020-2021 academic year. Sociodemographic data form, Maslach Burnout Inventory and Parent-Child Relationship Scale were given to parents. Results: Burnout of the parents with children with autism spectrum disorder is at a higher level. The development of the children with parents who had high burnout scores regressed. The progress in the development of children whose mothers were employed, whose parents did not work from home, whose family's monthly income was 4501 TL and above, and who received special education for 0-24 months until the restriction period of the pandemic was reported as better by the parents. Parents with children aged 11-below have more positive relationship with their children. Conclusion: Our study demonstrated that the closure of special education may play a role in increased burnout and negatively affected children and parents. Monitoring the development process of children and the mood of parents during pandemics or other situations that lead to the closure of special education centres will be important to identify the problem areas and prepare support programmes.

Anahtar Kelimeler

• Child
• special education
• people with disabilities
• burn-out
• parent-child relationship

Kaynakça

1. İsmail A. Problems of Minority Families and Normally Developing Siblings with Special Needs in West Thrace. (Thesis). Edirne: Trakya University; 2020.
2. Ministry of National Education. Official gazette, special education services regulation. Ankara; 2018. Access date: July 3, 2022. Available from: https://www.resmigazete.gov.tr/eskiler/2018/07/20180707-8.htm.
3. Ministry of Family, Labor and Social Services and Ministry of Health. Official Gazette, Regulation on Special Needs Assessment for Children. Access date: July 3, 2022. Available from: https://www.resmigazete.gov.tr/eskiler/2019/02/20190220.pdf.
4. Asbury K, Fox L, Deniz E, Code A, Toseeb U. How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families?. J Autism Dev Disord 2021;51:1772-80.
5. Longo E, de Campos AC, Schiariti V. COVID-19 pandemic: Is this a good time for ımplementation of home programs for children’s rehabilitation in lowand middle-ıncome countries?. Phys Occup Ther Pediatr 2020;40:361-4.
6. United Nations (UN) Policy note: Impacts of the COVID-19 pandemic on children. Retrieved July 3, 2022. Available from: https://www.unicef.org/turkey/media/9881/file/COVID-19%20D%C3%B6neminin%20%C3%87ocuklar%20%C3%9Czerindeki%20Etkilerine%20%C4%B0li%C5%9Fkin%20Politika%20Notu.pdf .
7. Roskam I, Raes M, Mikolajczak M. Exhausted parents: Development and preliminary validation of the parental burnout inventory. Front. Psychol 2017;8:163.
8. Gérain P, Zech E. Does informal caregiving lead to parental burnout? Comparing parents having (or not) children with mental and physical issues. Front. Psychol 2018;9:884.

9. Lindström C, Aman J, Norberg AL. Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatr 2010;99:427-32.
10. Beheshtipour N, Nasirpour P, Yektatalab S, Karimi M, Zare N. The effect of educational-spiritual intervention on the burnout of the parents of school age children with cancer: A randomized controlled clinical 109 trial. IJCBNM 2016;4:90-97.
11. Herr EL, Cramer SH. Career guidance and counseling through the life span: Systematic approaches. 5th ed. New York: Harper Collins College Publishers, 1996.
12. Le Vigouroux S, Scola C. Differences in parental burnout: influence of demographic factors and personality of parents and children. Front Psychol 2018;9:887.
13. Minners PM. Family resources and sttres associated with having a mentally retarded child. Am J Ment Retard 1988;93:184–92.
14. Cavkaytar A, Diken İH. Introduction to Special Education. 2nd ed. Ankara: Kök Publishing 2006.
15. COVID-19: School closures and aftermath. Retrieved July 3, 2022. Available from: https://tedmem.org/vurus/covid-19-okullarin-kapatilmasi-ve-sonrasi.
16. Başaran M, Aksoy A. Parents’ views on the family lives in the orona-virus (Covid-19) outbreak process. J Int Social Res 2020;13:668-78.
17. Lindahl Norberg A, Mellgren K, Winiarski J, Forinder U. Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation. Pediatr Transplant 2014;18:302-9.
18. Poslawsky IE, Naber FBA, Van Daalen E, Van Engeland H. Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry Hum Dev 2014;45:294-305.
19. Maslach C, Jackson SE. MBI. Maslach Burnout Inventory Manual. 2nd ed. California: Consulting Psychologists Press 1986.
20. Ergin C. Adaptation of Maslach Burnout Inventory on Doctors and Nurses. 7th National Psychology Congress Scientific Studies Handbook. 7th National Psychology Congress; 22-25 September 1992, Ankara, Turkey.
21. Hetherington EM, Clingempeel WG. Coping with marital transitions: A family systems perspective. Monogr Soc Res Child Dev 1992;57:i-238.
22. Aytaç AB, Çen S, Yüceol GP. Adaptation of parent-child relationship scale to Turkish: A study of validity and reliability. Turk J Child Adolesc Ment Health 2018;25:209-21.
23. Marchetti D, Fontanesi L, Mazza C, Di Giandomenico S, Roma P, Verrocchio MC. Parenting-related exhaustion during the Italian COVID-19 lockdown. J Pediatr Psychol 2020;45:1114-23.
24. Sorkkila M, Aunola K. Resilience and parental burnout among Finnish parents during the COVID-19 pandemic: Variable and person-oriented approaches. Fam J Alex Va 2022;30:139-47.
25. Sevimli E. Examination of the burnout levels and family functioning of the mothers of children with special needs in the 6-18 age group during the pandemic period. (Thesis). Ankara: Hacettepe University, 2022.
26. Teki RN. The Effect of Mealtime Behaviors of Autistic Children on Parental Burnout. (Thesis). Denizli: Pamukkale University, 2023.
27. Akoğlu G, Karaaslan BT. Possible psychosocial effects of the COVID-19 and isolation process on children. İKÇÜSBFD 2020;5:99-103.
28. Degli Espinosa F, Metko A, Raimondi M, Impenna M, Scognamiglio E. A model of support for families of children with autism living in the COVID-19 lockdown: Lessons from Italy. Behav Anal Pract 2020;13:550-8.
29. Cahapay MB. How Filipino parents home educate their children with autism during COVID-19 period. Int J Dev Disabil 2022;68:395-8.
30. Majoko T, Dudu A. Parents’ strategies for home educating their children with autism spectrum disorder during the COVID-19 period in Zimbabwe. Int J Dev Disabi, 2022;68:474-8.
31. Narzisi A. Handle the autism spectrum condition during Coronavirus (COVID-19) stay at home period: Ten tips for helping parents and caregivers of young children. Brain Sci 2020;10:207.
32. Rose J, Willner P, Cooper V, Langdon PE, Murphy GH, Stenfert Kroese B. The effect on and experience of families with a member who has ıntellectual and developmental disabilities of the COVID-19 pandemic in the UK: Developing an investigation. Int J Dev Disabil 2022;68:234-6.
33. Yarımkaya E, Esenturk OK. Promoting physical activity for children with autism spectrum disorders during Coronavirus outbreak: Benefits, strategies, and examples. Int J Dev Disabil 2022;68:430-5.
34. Guller B, Yaylaci F, Eyuboglu D. Those in the shadow of the pandemic: Impacts of the COVID-19 outbreak on the mental health of children with neurodevelopmental disorders and their parents. Int J Dev Disabil 2022;68:943-55.
35. Brown SM, Doom JR, Lechuga-Peña S, Watamura SE, Koppels T. Stress and parenting during the global COVID-19 pandemic. Child Abuse Negl 2020;110:104699.
36. Patwardhan I, Hurley KD, Thompson RW, Mason WA, Ringle JL. Child maltreatment as a function of cumulative family risk: Findings from the intensive family preservation program. Child Abuse Negl 2017;70:92-9.
37. Bodur T. Investigation into level of burnout and coping wi̇thout stress of mothers having children wi̇thout austin and mothers with healthy children. (Thesis). İstanbul: İstanbul Gelişim University, 2021.
38. Angode C, Ressa TW. The impact of COVID-19 pandemic on students with special needs: A case study of Kakamega County, Kenya. Insights into learning disabilities 2021;18:121-41.
39. Sorkkila M, Aunola K. Risk factors for parental burnout among Finnish parents: The role of socially prescribed perfectionism. J Child Fam Stud 2020;29:648-59.
40. Le Vigouroux S, Lebert-Charron A, Wendland J, Boujut E, Scola C, Dorard G. COVID-19 and parental burnout: Parents locked down but not more exhausted. J Fam Issues 2022;43:1705-20.