Examining the Experiences of Mothers of Children with Autism Spectrum Disorder: A Qualitative Analysis

Öz

Objective: This study aims to explore the experiences and challenges of mothers raising children diagnosed with autism spectrum disorder (ASD). Method: The study employed a qualitative design, conducting semi-structured interviews with 20 mothers living in the Eastern Black Sea region of Türkiye. The data were analyzed using interpretative phenomenological analysis. Results: The findings indicate that mothers experienced complex emotions upon first encountering ASD and reorganized their daily lives to accommodate their children's needs. Additionally, the study highlights that mothers face various economic, social, and psychological challenges. They also expressed significant concerns regarding their children's education, social integration, and future security. Conclusion: The study reveals that the challenges associated with caring for children with ASD may negatively impact mothers' quality of life.

Anahtar Kelimeler

• Autism spectrum disorder
• mother
• experience

Otizm Spektrum Bozukluğuna Sahip Çocuğu Olan Annelerin Deneyimlerinin İncelenmesi: Nitel Bir Analiz

Öz

Amaç: Bu çalışma, otizm spektrum bozukluğu (OSB) tanısı almış çocuklara sahip annelerin deneyimlerini ve yaşadıkları zorlukları anlamayı amaçlamaktadır. Yöntem: Çalışma, Türkiye’nin Doğu Karadeniz bölgesinde yaşayan 20 anneyle yarı yapılandırılmış görüşmeler yoluyla, nitel bir tasarım kullanılarak gerçekleştirilmiştir. Veriler, fenomenolojik analiz yöntemiyle incelenmiştir. Bulgular: Annelerin OSB ile ilk karşılaşma süreçlerinde karmaşık duygular yaşadığı ve günlük yaşamlarını çocuklarının ihtiyaçlarına göre yeniden yapılandırdıkları anlaşılmıştır. Ayrıca çalışma, annelerin ekonomik, sosyal ve psikolojik alanlarda çeşitli zorluklarla karşılaştıklarını göstermektedir. Annelerin, çocuklarının eğitimi, sosyal entegrasyonu ve gelecekteki güvenliği konularında önemli kaygılar taşıdığı belirlenmiştir. Sonuç: Çalışma, OSB’li çocukların bakımında karşılaşılan zorlukların annelerin yaşam kalitesini olumsuz yönde etkileyebileceğini ortaya koymaktadır.

Anahtar Kelimeler

• Otizm spektrum bozukluğu
• anne
• deneyim

Kaynakça

1. Acharya, S., & Sharma, K. (2021). Lived experiences of mothers raising children with autism in Chitwan District, Nepal. Autism Research and Treatment, 2021(1), 6614490.
2. Akkuş, P. Z., Saygan, B. B., Bahadur, E. İ., Tuna, C. A. K., & Özmert, E. (2021). Otizm spektrum bozukluğu tanısı ile yaşamak: Ailelerin deneyimleri. Türkiye Çocuk Hastalıkları Dergisi, 15(4), 272-279.
3. Alhuzimi, T. (2021). Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Research in Developmental Disabilities, 108, 103822.
4. Alkhateeb, J. M., Hadidi, M. S., & Mounzer, W. (2022). The impact of autism spectrum disorder on parents in arab countries: a systematic literature review. Frontiers in psychology, 13, 955442.
5. American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders (5th ed.).
6. Barrett, B., Byford, S., Sharac, J., Hudry, K., Leadbitter, K., Temple, K., ... & Pact Consortium. (2012). Service and wider societal costs of very young children with autism in the UK. Journal of autism and developmental disorders, 42, 797-804.
7. Bebbington, A., & Beecham, J. (2007). Social services support and expenditure for children with autism. Autism, 11(1), 43-61.
8. Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in mental health nursing, 37(3), 153-163.

9. Bowen, G. A. (2009). Supporting a grounded theory with an audit trail: An illus- tration. International Journal of Social Research Methodology, 12(4), 305–316. https://doi.org/10.1080/13645570802156196
10. Brandão, T., Diniz, E., Basto-Pereira, M., & Babore, A. (2024). Emotion regulation and parental burnout: A systematic review and meta-analysis. Clinical Psychology: Science and Practice, 31(1), 97.
11. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706q p063oa
12. Cassidy, A., McConkey, R., Truesdale‐Kennedy, M., & Slevin, E. (2008). Preschoolers with autism spectrum disorders: The impact on families and the supports available to them. Early Child Development and Care, 178(2), 115-128.
13. Cavkaytar, A., & Özen, A. (2010). Aile katılımı ve eğitimi. G. Akçamete (Ed.), Özel eğitim [Special education] içinde (ss. 169-202). Kök Yayıncılık.
14. Centers for Disease Control and Prevention (CDC). (2020). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020, (69)4, 1-12. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1
15. Chan, K. K. S., & Lam, C. B. (2018). Self-stigma among parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 48, 44-52.
16. Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children diagnosed with autism spectrum disorder: A claims-based analysis. Journal of autism and developmental disorders, 47, 1416-1422.
17. Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage publications.
18. Crowell, J. A., Keluskar, J., & Gorecki, A. (2019). Parenting behavior and the development of children with autism spectrum disorder. Comprehensive psychiatry, 90, 21-29.
19. Çınar, İ., Çınar, Ş., Sarıkaya, E., & Yağızefe, D. (2023). Otizm spektrum bozukluğu/yaygın gelişimsel bozuklukta ailelerin ekonomik yükleri. Hacettepe Sağlık İdaresi Dergisi, 26(1): 49-64
20. Çokyaman, T., & Battal, F. (2020). Evaluation of Caregiving Load From Caring For Children With Autism And Down Syndrome Through Zarit Burden Interview. Sakarya Tıp Dergisi, 10(2), 210-215.
21. Denzin, N. K., & Lincoln, Y. S. (Eds.). (2011). The Sage handbook of qualitative research. sage.
22. Fallahchai, R., & Fallahi, M. (2022). Parental stress and dyadic adjustment among parents of children with ASD: Moderating effects of dyadic coping and perceived social support. Research in Developmental Disabilities, 123, 104192.
23. Fayız, A. N., & Palancı, M. (2023). Investigation of self-efficacy, quality of life perceptions and resilience levels of parents with children with autism by mediator variable analysis. Egitim ve Bilim, 48(214), 73-98.
24. Fırat, S. (2016). Levels of depression and anxiety among parents of autistic children. Cukurova Medical Journal, 41(3), 539-547.
25. Ganz, M. L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of pediatrics & adolescent medicine, 161(4), 343-349.
26. Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism, 17(4), 465-480.
27. Grandin, T. (2010). How does visual thinking work in the mind of a person with autism? A personal account. Autism and talent, 141-149.
28. Güneş, E., & Tuncer, M. (2023). The Relationship Between Maternal Chronic Disease, Infection, and Having a Child with Autism Spectrum Disorder. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, 8(1), 95-100.
29. Hall, H. R. (2012). Families of children with autism: Behaviors of children, community support and coping. Issues in comprehensive pediatric nursing, 35(2), 111-132.
30. Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in comprehensive pediatric nursing, 34(1), 4-25.
31. Helland, W. A., & Helland, T. (2017). Emotional and behavioural needs in children with specific language impairment and in children with autism spectrum disorder: The importance of pragmatic language impairment. Research in Developmental Disabilities, 70, 33-39.
32. Kiral, B. (2020). Document analysis as a qualitative data analysis method. Journal of Social Sciences Institute, 8(15), 170-189.
33. Kosić, R., Duraković Tatić, A., Petrić, D., & Kosec, T. (2021). The impact of autism spectrum disorders on the family. Medicina Fluminensis: Medicina Fluminensis, 57(2), 139-149.
34. Köksal, M., & Eerciyes, J. C. (2021). Evaluation of psycho-social problems in the families of children diagnosed with autism. Aydın Sağlık Dergisi, 7(3), 235-254.
35. Kuhaneck, H. M., Madonna, S., Novak, A., & Pearson, E. (2015). Effectiveness of interventions for children with autism spectrum disorder and their parents: A systematic review of family outcomes. The American Journal of Occupational Therapy, 69(5), 6905180040p1-6905180040p14.
36. Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E., & Tilford, J. M. (2014). Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(10), 1339-1350.
37. Kütük, M. Ö., Tufan, A. E., Kılıçaslan, F., Güler, G., Çelik, F., Altıntaş, E., ... & Kütük, Ö. (2021). High depression symptoms and burnout levels among parents of children with autism spectrum disorders: A multi-center, cross-sectional, case–control study. Journal of autism and developmental disorders, 51(1), 4086-4099. https://doi.org/10.1007/s10803-021-04874-4
38. Kwok, & Wong. (2000). Mental health of parents with young children in Hong Kong: The roles of parenting stress and parenting self‐efficacy. Child & Family Social Work, 5(1), 57-65.
39. Liao, X., Lei, X., & Li, Y. (2019). Stigma among parents of children with autism: A literature review. Asian journal of psychiatry, 45, 88-94.
40. Lodder, A., Papadopoulos, C., & Randhawa, G. (2019). Stigma of living as an autism carer: a brief psycho-social support intervention (SOLACE). Study protocol for a randomised controlled feasibility study. Pilot and Feasibility Studies, 5, 1-8.
41. Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474.
42. Ludlow, A., Skelly, C., & Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of health psychology, 17(5), 702-711.
43. Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping and social support for parents of children with autism. The journal of school nursing, 21(1), 40-47.
44. Maenner, M. J. (2020). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR. Surveillance Summaries, 69.
45. McStay, R., Trembath, D., & Dissanayake, C. (2015). Raising a child with autism: A developmental perspective on family adaptation. Current Developmental Disorders Reports, 2(1), 65-83.
46. Mengi, A. (2019). Sosyolojik boyutlarıyla otizm. Ankara.
47. Nealy, C. E., O'Hare, L., Powers, J. D., & Swick, D. C. (2012). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 15(3), 187-201.
48. Ng, C. S. M., & Ng, S. S. L. (2022). A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder. Scientific Reports, 12(1), 19550.
49. Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 1609406917733847. https://doi.org/10.1177 %2F1609406917733847
50. Ntre, V., Papanikolaou, K., Triantafyllou, K., Giannakopoulos, G., Kokkosi, M., & Kolaitis, G. (2018). Psychosocial and financial needs, burdens and support, and major concerns among Greek families with children with autism spectrum disorder (ASD). International Journal of Caring Sciences, 11(2), 985-995.
51. Otizm Konfederasyonu. (2024). Autism Confederation. Retrieved from: https://otizmkonfederasyonu.org.tr/
52. Ou, J. J., Shi, L. J., Xun, G. L., Chen, C., Wu, R. R., Luo, X. R., ... & Zhao, J. P. (2015). Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: results from a descriptive study. BMC psychiatry, 15, 1-8.
53. Özkubat, U., Özdemir, S., Selimoğlu, Ö. G., & Töret, G. (2014). Otizme yolculuk: Otizmli çocuğa sahip ebeveynlerin sosyal destek algılarına ilişkin görüşleri. Ondokuz Mayis University Journal of Education Faculty, 33(1), 323-348.
54. Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain sciences, 11(3), 309.
55. Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., ... & Nardocci, F. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clinical practice and epidemiology in mental health: CP & EMH, 14, 143.
56. Reid, K., Flowers, P., & Larkin, M. (2005). Exploring lived experience. Psychologist, 18(1), 20-23.
57. Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of autism and developmental disorders, 44, 1609-1620.
58. Roskam, I., Brianda, M. E., & Mikolajczak, M. (2018). A step forward in the conceptualization and measurement of parental burnout: The Parental Burnout Assessment (PBA). Frontiers in psychology, 9, 758.
59. Roulston, K. (2010). Considering quality in qualitative interviewing. Qualitative Research, 10(2), 199–228. https://doi.org/10.1177/1468794109356739
60. Salari, N., Rasoulpoor, S., Rasoulpoor, S., Shohaimi, S., Jafarpour, S., Abdoli, N., ... & Mohammadi, M. (2022). The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Italian Journal of Pediatrics, 48(1), 112.
61. Shepherd, D., Landon, J., Taylor, S., & Goedeke, S. (2018). Coping and care-related stress in parents of a child with autism spectrum disorder. Anxiety, Stress, & Coping, 31(3), 277-290.
62. Smith, J. A., Larkin, M., & Flowers, P. (2021). Interpretative phenomenological analysis: Theory, method and research.
63. Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of autism and developmental disorders, 40, 167-178.
64. Spain, D., Sin, J., Linder, K. B., McMahon, J., & Happé, F. (2018). Social anxiety in autism spectrum disorder: A systematic review. Research in autism spectrum disorders, 52, 51-68.
65. Swit, C. S., & Breen, R. (2023). Parenting during a pandemic: Predictors of parental burnout. Journal of Family Issues, 44(7), 1817-1837.
66. Syriopoulou-Delli, C. K., Polychronopoulou, S. A., Kolaitis, G. A., & Antoniou, A. S. G. (2020). Review of Interventions for Inclusion of Children with ASD and Anxiety in Education. J. Educ. Dev. Psychol, 10.
67. Tiryaki, A., & Sever, M. (2025). ‘Birisi de kek yapıp getirse…!’ Otizm spektrum bozukluğuna sahip çocuğu olan annelerin bakım yükü üzerine nitel bir çalışma. Tıbbi Sosyal Hizmet Dergisi, 12(24), 37-65. https://doi.org/10.46218/tshd.1466704
68. Todd, S. (2013). The little book of the autism spectrum (Otizm Spektrum El Kitabı) (Ed. Redif, S.) Palme Yayıncılık.
69. Tohum Otizm. (2019). National Standards project: Findings and results summary report. (Retrieved from: https://tohumotizm.org.tr/wp-content/uploads/2019/10/Nac_Raporu_2019.pdf).
70. Tüfek, G., & Sarı, S. (2016). Otizm bilinci ve otizmli çocuğu olan ailelerin yaşadığı problemler (Anadolu otizm vakfında eğitim gören öğrenci aileleri örneği). TÜBİTAK projesi.
71. Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36-49.
72. Whelan, S., Caulfield, N., O’Doherty, S., Mannion, A., & Leader, G. (2024). Parental experiences of raising an autistic child in Ireland: A qualitative thematic analysis. Autism, 13623613241277040.
73. Yavuz, M., & Gümüşkaya, Ö. (2021). Otizm spektrum bozukluğu ve zihinsel yetersizliği olan bireylerin ebeveynlerinin yaşam doyumu ve aile yılmazlık düzeylerinin incelenmesi. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 22(4), 799-825.
74. Zeydan, N. N., & Yılmaz, H. B. (2023). The relationship between caregiving burden and social support of parents of children with autism spectrum disorder. Sağlık Akademisyenleri Dergisi, 10(3), 403-410.