Otizm Spektrum Bozukluğu Tanısı İle Yaşamak: Ailelerin Deneyimleri

Öz

Giriş ve Amaç: Sosyal ve iletişimsel kısıtlılık ile tekrarlayıcı ve kısıtlı davranışlarla karakterize bir nörogelişimsel bozukluk olan Otizm Spektrum Bozukluğu’nun (OSB) sıklığı dünyada giderek artmaktadır. OSB tanısı konan çocuğun tipik gelişim gösteren yaşıtlarına göre gereksinimlerinin daha fazla olması, bu gereksinimleri karşılama sorumluluğunu da arttırmakta ve bu durum ailelerin hayatını zorlaştırabilmektedir. Bu araştırmada, okul öncesi dönemde OSB tanısı konmuş çocuğu olan ailelerin yaşadıkları deneyimlerin ve tanının yaşamlarına etkisinin derinlemesine incelenmesi hedeflenmiştir.

Yöntem: Bu amaçla OSB tanısı konmuş çocuğu alan 19 anne ile yarı yapılandırılmış bireysel görüşmeler yapılıp, sonrasında veriler tematik analiz yöntemiyle kodlanmıştır.

Bulgular: Çalışmanın sonucunda, OSB tanısının aile ilişkileri, sosyal yaşam ve iş hayatı üzerinde yarattığı olumsuz etkiler ortaya konmuştur. Ayrıca, OSB tanısı konmuş çocuğun ve ebeveynlerinin günlük hayatta, okul hayatında ve sağlık hizmeti alırken yaşadıkları zorluklar belirlenmiştir.

Sonuç: Bu çalışmanın bulguları, OSB tanısı konmuş çocuğu olan ailelerin deneyimlerini ve yaşadıkları zorlukları derinlemesine anlama olanağı verdiğinden, alanda hizmet verenler ve politika yapıcılar tarafından dikkate alınmasının yararlı olacağı düşünülmektedir.

Anahtar Kelimeler

• Otizm spektrum bozukluğu
• erken çocukluk dönemi
• aile deneyimleri

Living With Autism Spectrum Disorder: Family Experiences

Öz

Background and Objectives: The prevalence of Autism Spectrum Disorder (ASD), which is a neurodevelopmental disorder characterized by impairments in social interaction and communication in addition to repetitive restricted behaviors, is increasing globally. Increased caretaking demands of children diagnosed with ASD, thereby increased responsibilities of their parents may put a burden on each family member and their whole familial experiences. This study aimed to explore the effects of ASD diagnosis from the perspective of whole family life in order to gain an in-depth understanding of the experience of ASD.

Method: Semi-structured interviews were made with 19 mothers having a preschool-aged child diagnosed with ASD. Then the data were coded by a thematic analysis method.

Results: The results of this study revealed the unfavorable effects of ASD diagnosis on interpersonal relationships, social life, and work life of participants. Moreover, the challenges faced by the child diagnosed with ASD and their parents in daily life, school life, and while receiving care in medical settings were identified.

Conclusion: Since the current study provides an opportunity to gain a deeper understanding of the challenges faced by families raising a child with ASD, results of this study would be beneficial for service providers and health policymakers to provide a better support to the children with ASD and their families.

Anahtar Kelimeler

• Autism Spectrum Disorder
• early childhood
• family experiences

Kaynakça

1. 1. Association AP. Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub; 2013.
2. 2. Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1-23.
3. 3. Kondolot M, Özmert EN, Öztop DB, et al. The modified checklist for autism in Turkish toddlers: A different cultural adaptation sample. Research in Autism Spectrum Disorders. 2016;21:121-127.
4. 4. Wong C, Odom SL, Hume KA, et al. Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review. J Autism Dev Disord. 2015;45(7):1951-1966.
5. 5. Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43(3):629-642.
6. 6. Child, Initiative AHM. National profile of children with special health care needs and autism spectrum disorders: Key findings from the 2009/10 NS-CSHCN & 2007 NSCH. Data Resource Center. 2012.
7. 7. Horlin C, Falkmer M, Parsons R, et al. The cost of autism spectrum disorders. PLoS One. 2014;9(9):e106552.
8. 8. Kinnear SH, Link BG, Ballan MS, et al. 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. 2016;46(3):942-953.

9. 9. Hoogsteen L, Woodgate RL. Centering autism within the family: a qualitative approach to autism and the family. J Pediatr Nurs. 2013;28(2):135-140.
10. 10. Woodgate RL, Ateah C, Secco L. Living in a world of our own: the experience of parents who have a child with autism. Qual Health Res. 2008;18(8):1075-1083.
11. 11. Özkubat U, Özdemir S, Selimoğlu ÖG, et al. Otizme yolculuk: Otizmli çocuğa sahip ebeveynlerin sosyal destek algılarına ilişkin görüşleri. Ondokuz Mayıs Üniversitesi Eğitim Fakültesi Dergisi. 2014;33(1):323-348.
12. 12. Töret G, Özdemir S, Selimoğlu ÖG, et al. Otizmli çocuğa sahip olan ebeveynlerin görüşleri: Otizm tanımlamaları ve otizmin nedenleri. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi. 2014;15(01):1-17.
13. 13. Hollingshead AB, Redlich FC. Social class and mental illness: a community study. 1958. Am J Public Health. 2007;97(10):1756-1757.
14. 14. Shepherd D, Csako R, Landon J, et al. Documenting and understanding parent’s intervention choices for their child with autism spectrum disorder. Journal of Autism and Developmental Disorders. 2018;48(4):988-1001.
15. 15. Ludlow A, Skelly C, Rohleder P. Challenges faced by parents of children diagnosed with autism spectrum disorder. J Health Psychol. 2012;17(5):702-711.
16. 16. Fernańdez-Alcántara M, García-Caro MP, Pérez-Marfil MN, et al. Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD). Res Dev Disabil. 2016;55:312-321.
17. 17. Zengin-Akkuş P, Çelen-Yoldaş T, Kurtipek G, et al. Speech delay in toddlers: Are they only `late talkers`? Turk J Pediatr. 2018;60(2):165-172 . 18. Zuckerman KE, Lindly OJ, Sinche BK. Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. J Pediatr. 2015;166(6):1431-1439.e1431.
18. 19. Karst JS, Van Hecke AV. Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation. Clinical Child and Family Psychology Review. 2012;15(3):247-277.
19. 20. Hoffman CD, Sweeney DP, Hodge D, et al. Parenting Stress and Closeness:Mothers of Typically Developing Children and Mothers of Children With Autism. Focus on Autism and Other Developmental Disabilities. 2009;24(3):178-187.
20. 21. Hartley SL, Barker ET, Seltzer MM, et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol. 2010;24(4):449-457.
21. 22. Petalas MA, Hastings RP, Nash S, et al. “I like that he always shows who he is”: The perceptions and experiences of siblings with a brother with autism spectrum disorder. International Journal of Disability, Development and Education. 2009;56(4):381-399.
22. 23. Petalas MA, Hastings RP, Nash S, et al. The perceptions and experiences of adolescent siblings who have a brother with autism spectrum disorder. Journal of Intellectual and Developmental Disability. 2012;37(4):303-314.
23. 24. Hutton AM, Caron SL. Experiences of Families With Children With Autism in Rural New England. Focus on Autism and Other Developmental Disabilities. 2005;20(3):180-189.
24. 25. Woodgate RL, Ateah C, Secco L. Living in a World of Our Own: The Experience of Parents Who Have a Child With Autism. Qualitative Health Research. 2008;18(8):1075-1083.
25. 26. Boyd BA. Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on autism and other developmental disabilities. 2002;17(4):208-215.
26. 27. Rabba AS, Dissanayake C, Barbaro J. Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders. 2019;66:101415.
27. 28. Montes G, Halterman JS. Association of childhood autism spectrum disorders and loss of family income. Pediatrics. 2008;121(4):e821-e826.
28. 29. Gray DE. ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness. 2002;24(6):734-749.
29. 30. Broady TR, Stoyles GJ, Morse C. Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum. Health & social care in the community. 2017;25(1):224-233.
30. 31. Muskat B, Burnham Riosa P, Nicholas DB, et al. Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. Autism. 2015;19(4):482-490.