Otizm spektrum bozukluğu tanılı çocuğa sahip annelerin ebeveynlik stresi ve çocuk sahibi olma motivasyonları: Analitik-kesitsel bir çalışma
Year 2024,
Volume: 5 Issue: 2, 140 - 148, 31.08.2024
Ayşenur Karpuzluk
,
Ayşe Akalın
Abstract
Aim: The study aimed to identify the predictors of parenting stress and childbearing motivations among mothers of children with autism spectrum disorder (ASD).
Methods: An analytical cross-sectional study was conducted with 165 mothers of children diagnosed with ASD in Türkiye from November 2021 to January 2022. Data were collected using a Questionnaire-Form, the Parenting-Stress Index-Short Form, and the Childbearing Motivations Scale. The data were analyzed using independent samples t-tests, one-way analysis of variance (ANOVA), correlation analysis, and regression analysis.
Results: The participants' parental stress levels are moderately high, and their motivation for having children is low. The mother's age, education level, birth order of the child with ASD, and the impact of ASD on the decision to have another child were statistically significant predictors of parental stress level, explaining 20.1% of the variance (p<0.05). The mother's education level, income status, birth order of the child with ASD, and the desire to have another child were statistically significant predictors of positive motivation for having children, explaining 18.7% of the variance (p<0.05). Additionally, there was a statistically significant, moderately positive relationship between parental stress and negative motivation for having children (r= 0.345; p<0.001).
Conclusion: Mothers of children with ASD tend to exhibit negative motivations regarding the decision to have another child. Improving socioeconomic status and reducing parenting-stress may help these mothers develop more positive motivations for childbearing and prevent negative motivations.
Ethical Statement
Ethical committee approval was received from the Non-Interventional Health Research Ethical Committee of Düzce University (Date: July 05, 2021 Approval No: 2021/165).
Supporting Institution
The authors reported there was no funding associated with the work featured in this paper.
Thanks
The authors would like to thank the mothers of children with autism spectrum disorder who participated in this study.
References
- Abidin, R. R. (1995). Parenting stress index (3rd ed.). Psychological Assessment Resources.
- American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (DSM-5) (5th ed.). American Psychiatric Press Inc.
- Ayhan, F., Teze, S., & Sonay Türkmen, A. (2022). The relationship between the presence of depression and attachment styles of mothers with autistic children. The American Journal of Family Therapy, 50(2), 131-143. https://doi.org/10.1080/01926187.2021.1872044
- Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of different clinical groups: A systematic review & meta-analysis. Journal of Abnormal Child Psychology, 46(3), 449-461. https://doi.org/10.1007/s10802-017-0313-6
- Bekhet, A. K., & Garnier-Villarreal, M. (2018). Depression, positive thinking, personal and social resourcefulness among caregivers of persons with autism spectrum disorders. Archives of Psychiatric Nursing, 32(6), 823-827. https://doi.org/10.1016/j.apnu.2018.06.006
- Centers for Disease Control and Prevention (CDC). (2016). Autism spectrum disorder: Data & Statistics. http://www.cdc.gov/ncbddd/autism/data.html
- Cetinbakis, G., Bastug, G., & Ozel-Kizil, E. T. (2020). Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders. International Journal of Developmental Disabilities, 66(1), 46-53. https://doi.org/10.1080/20473869.2018.1478630
- Cohen, J. (1988). Statistical power analysis for the behavioral sciences. Lawrence Erlbaum Associates.
- Dardas, A., & Ahmad, M. (2014). Psychometric properties of the parenting stress index with parents of children with autistic disorder. Journal of Intellectual Disability Research, 58(6), 560-571. https://doi.org/10.1111/jir.12053
- Diken, İ. (2006). Turkish mothers' interpretation of the disability of their children with mental retardation. International Journal of Special Education, 21(2), 8-17.
- Falk, N. H., Norris, K., & Quinn, M. G. (2014). The factors predicting stress, anxiety and depression in the parents of children with autism. Journal of Autism and Developmental Disorders, 44, 3185-3203. https://doi.org/10.1007/s10803-014-2189-4
- Federation of Autism Associations. (2024). Autism in Turkey. http://www.odfed.org/otizm/
- Guedes, M., Pereira, M., Pires, R., Carvalho, P., & Canavarro, M. (2015). Childbearing motivations scale: Construction of a new measure and its preliminary psychometric properties. Journal of Child and Family Studies, 24, 180-194. https://doi.org/10.1007/s10826-013-9824-0
- Güleç-Aslan, Y. (2017). The life experiences of Turkish mothers who have children with an autism spectrum disorder. Advances in Social Sciences Research Journal, 4(6), 149-169. https://doi.org/10.14738/assrj.46.2812
- Hayes, S. A., & Watson, S. L. (2013). 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. Journal of Autism and Developmental Disorders, 43(3), 629-642. https://doi.org/10.1007/s10803-012-1604-y
- Hüseyinzade Şimşek, A. (2017). Çocuk sahibi olma motivasyonları ölçeği Türkçeye uyarlama geçerlik ve güvenirlik çalışması [Adaptation, validity, and reliability study of the childbearing motivations scale in Turkish]. The Journal of Social Science, 4(13), 395-408. https://doi.org/10.16990/SOBIDER.3654
- Ivey, K. J. (2004). What do parents expect? A study of likelihood and importance issues for children with autism spectrum disorders. Focus on Autism and other Developmental Disabilities, 19(1), 27-33. https://doi.org/10.1177/10883576040190010401
- Karaca, A., & Konuk Sener, D. (2021). Spirituality as a coping method for mothers of children with developmental disabilities. International Journal of Developmental Disabilities, 67(2), 112-120. https://doi.org/10.1080/20473869.2019.1603730
- Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147-1160. https://doi.org/10.1007/s10803-007-0491-0
- Liu, S., Deng, T., Chen, M., Ji, Y., Dai, Y., Zhang, T., & Zhang, L. (2023). Parenting confidence and social support as predictors of coping strategies in parents of children newly diagnosed with autism spectrum disorder: A cross-sectional study. Journal of Advanced Nursing, 79(10), 3946-3955. https://doi.org/10.1111/jan.15708
- Meirsschaut, M., Roeyers, H., & Warreyn, P. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mothers’ experiences and cognitions. Research in Autism Spectrum Disorders, 4(4), 661-669. https://doi.org/10.1016/j.rasd.2010.01.002
- Mert, E., Hallıoğlu, O., & Ankaralı, Ç. (2008). Ebeveyn stres indeksi/kısa form (PSI/SF) Türkçe uyarlaması: Bir psikometrik çalışma [Adaptation of the parenting stress index/short form (PSI/SF) to Turkish: A psychometric study]. Türkiye Klinikleri Journal of Medical Sciences, 28, 291-296.
- Navot, N., Jorgenson, A. G., Vander Stoep, A., Toth, K., & Webb, S. J. (2016). Family planning and family vision in mothers after diagnosis of a child with autism spectrum disorder. Autism, 20(5), 605-615. https://doi.org/10.1177/1362361315602134
- Nicholas, D.B, MacCulloch, R., Roberts, W., Zwaigenbaum, L., McKeever, P. (2020). Tensions in maternal care for children, youth, and adults with autism spectrum disorder. Global Qualitative Nursing Research, 19, 7, https://doi.org/10.1177/2333393620907588
- Papadopoulos, D. (2021). Mothers' experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
- Pepperell, T. A., Paynter, J., & Gilmore, L. (2018). Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 188(10), 1392-1404. https://doi.org/10.1080/03004430.2016.1261338
- Prata, J., Lawson, W., & Coelho, R. (2019). Stress factors in parents of children on the autism spectrum: An integrative model approach. International Journal of Clinical Neurosciences and Mental Health, 6(2), 1-9. https://doi.org/10.21035/ijcnmh.2019.6.2
- Rayan, A., & Ahmad, M. (2017). Psychological distress in jordanian parents of children with autism spectrum disorder: The role of positive reappraisal coping. Archives of Psychiatric Nursing, 31(1), 38-42. https://doi.org/10.1016/j.apnu.2016.07.017
- Reddy, G., Fewster, D. L., & Gurayah, T. (2019). Parents’ voices: experiences and coping as a parent of a child with autism spectrum disorder. South African Journal of Occupational Therapy, 49(1), 43–50. http://dx.doi.org/10.17159/2310-3833/2019/vol49n1a7
- Selkirk, C., McCarthy Veach, V., Lian, F., Schimmenti, F., & Leroy, B. (2009). Parents' perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. International Journal of Human Genetics, 18(5), 507-519. https://doi.org/10.1007/s10897-009-9233-0
- Shattnawi, K. K., Bani, S. W. M., Al-Natour, A., Al-Hammouri, M. M., Al-Azzam, M., & Joseph, R. A. (2020). Parenting a child with autism spectrum disorder: Perspective of Jordanian mothers. Journal of Transcultural Nursing: Official Journal of the Transcultural Nursing Society, 32(5), 474-483. https://doi.org/10.1177/1043659620970634
- Şengül Erdem, H. (2023). Otizm spektrum bozukluğu olan birden fazla çocuğa sahip annelerin deneyimleri: yorumlayıcı fenomenolojik analiz çalışması [Experiences of mothers of multiple children with autism spectrum disorder: An interpretative phenomenological analysis study]. Ankara University Faculty of Educational Sciences Journal of Special Education, 24(2), 215-234. https://doi.org/10.21565/ozelegitimdergisi.1013765
- Şimşek Tarsuslu, T., Taşçı, M., & Karabulut, T. (2015). Desire to have other children in families with a chronically disabled child and its effect on the relationship of the parents. Turkish Archives of Pediatrics, 50(3), 163-169. https://doi.org/10.5152/TurkPediatriArs.2015.2795
- The Report of Parliamentary Research Commission. (2020). The report of parliamentary research commission established to determine the prevalence of down syndrome, autism and other developmental disorders and to determine the measures to be taken to solve the problems of ındividuals and their families. https://acikerisim.tbmm.gov.tr/handle/11543/3136
- Tsermentseli, S., & Kouklari, E. C. (2021). Impact of child factors on parenting stress of mothers of children with autism spectrum disorder and intellectual disability: A UK school-based study. Early Child Development and Care, 191(10), 1555-1566. https://doi.org/10.1080/03004430.2019.1658090
- Valicenti McDermott, M., Lawson, K., Seijo, R., Hottinger, K., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 30(13), 1728-1735. https://doi.org/10.1177/0883073815579705
- Walter, S. M., & Smith, M. J. (2016). Mothering a child with autism. Archives of Psychiatric Nursing, 30(5), 600-601. https://doi.org/10.1016/j.apnu.2016.01.016
- White, N., & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17(3), 181-190. https://doi.org/10.1111/j.1468-3148.2004.00197.x
Otizm spektrum bozukluğu tanılı çocuğa sahip annelerin ebeveynlik stresi ve çocuk sahibi olma motivasyonları: Analitik-kesitsel bir çalışma
Year 2024,
Volume: 5 Issue: 2, 140 - 148, 31.08.2024
Ayşenur Karpuzluk
,
Ayşe Akalın
Abstract
Amaç: Bu çalışmanın amacı, otizm spektrum bozukluğu (OSB) olan çocukların annelerinde ebeveynlik stresi ve çocuk sahibi olma motivasyonlarınının incelenmesidir.
Yöntem: Analitik-kesitsel çalışma, Kasım 2021 ve Ocak 2022 arasında OSB’li 165 çocuğun annesiyle gerçekleştirilmiştir. Veriler Anket Formu, Ebeveynlik Stresi İndeksi-Kısa Formu ve Çocuk Sahibi Olma Motivasyonları Ölçeği kullanılarak toplanmıştır. Verilerin analizinde tek yönlü varyans analizi, bağımsız örneklem t-testi, korelasyon ve regresyon analizleri kullanılmıştır.
Bulgular: Katılımcıların ebeveynlik stresi orta düzeyde yüksek iken çocuk sahibi olma motivasyonları düşük düzeyde olumludur. Anne yaşı, eğitimi, OSB’li çocuğun doğum sırası ve OSB'nin başka çocuk sahibi olma kararını etkileme durumu, ebeveynlik stres düzeyinin istatistiksel olarak anlamlı yordayıcısı olup varyansın %20.1'ini açıklamaktadır (p<0.05). Anne eğitimi, gelir düzeyi, OSB’li çocuğun doğum sırası ve başka çocuk sahibi olma isteği, çocuk sahibi olmaya yönelik olumlu motivasyonun istatistiksel olarak anlamlı yordayıcısı olup varyansın %18.7'sini açıklamaktadır. Ebeveynlik stresi ve olumsuz çocuk sahibi olma motivasyonları arasında pozitif yönlü orta düzeyde istatistiksel olarak anlamlı ilişki bulunmaktadır (r=0.345; p<0.001).
Sonuçlar: OSB’li çocukları olan anneler, başka bir çocuk sahibi olma kararına yönelik olumsuz motivasyonlar sergilemektedirler. Sosyoekonomik durumun iyileştirilmesi ve ebeveynlik stresinin azaltılması, bu annelerin çocuk sahibi olma konusunda daha olumlu motivasyonlar geliştirmelerine yardımcı olabilir ve olumsuz motivasyonların önüne geçebilir.
Ethical Statement
Ethical committee approval was received from the Non-Interventional Health Research Ethical Committee of Düzce University (Date: July 05, 2021 Approval No: 2021/165).
Supporting Institution
The authors reported there was no funding associated with the work featured in this paper.
Thanks
The authors would like to thank the mothers of children with autism spectrum disorder who participated in this study.
References
- Abidin, R. R. (1995). Parenting stress index (3rd ed.). Psychological Assessment Resources.
- American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (DSM-5) (5th ed.). American Psychiatric Press Inc.
- Ayhan, F., Teze, S., & Sonay Türkmen, A. (2022). The relationship between the presence of depression and attachment styles of mothers with autistic children. The American Journal of Family Therapy, 50(2), 131-143. https://doi.org/10.1080/01926187.2021.1872044
- Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of different clinical groups: A systematic review & meta-analysis. Journal of Abnormal Child Psychology, 46(3), 449-461. https://doi.org/10.1007/s10802-017-0313-6
- Bekhet, A. K., & Garnier-Villarreal, M. (2018). Depression, positive thinking, personal and social resourcefulness among caregivers of persons with autism spectrum disorders. Archives of Psychiatric Nursing, 32(6), 823-827. https://doi.org/10.1016/j.apnu.2018.06.006
- Centers for Disease Control and Prevention (CDC). (2016). Autism spectrum disorder: Data & Statistics. http://www.cdc.gov/ncbddd/autism/data.html
- Cetinbakis, G., Bastug, G., & Ozel-Kizil, E. T. (2020). Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders. International Journal of Developmental Disabilities, 66(1), 46-53. https://doi.org/10.1080/20473869.2018.1478630
- Cohen, J. (1988). Statistical power analysis for the behavioral sciences. Lawrence Erlbaum Associates.
- Dardas, A., & Ahmad, M. (2014). Psychometric properties of the parenting stress index with parents of children with autistic disorder. Journal of Intellectual Disability Research, 58(6), 560-571. https://doi.org/10.1111/jir.12053
- Diken, İ. (2006). Turkish mothers' interpretation of the disability of their children with mental retardation. International Journal of Special Education, 21(2), 8-17.
- Falk, N. H., Norris, K., & Quinn, M. G. (2014). The factors predicting stress, anxiety and depression in the parents of children with autism. Journal of Autism and Developmental Disorders, 44, 3185-3203. https://doi.org/10.1007/s10803-014-2189-4
- Federation of Autism Associations. (2024). Autism in Turkey. http://www.odfed.org/otizm/
- Guedes, M., Pereira, M., Pires, R., Carvalho, P., & Canavarro, M. (2015). Childbearing motivations scale: Construction of a new measure and its preliminary psychometric properties. Journal of Child and Family Studies, 24, 180-194. https://doi.org/10.1007/s10826-013-9824-0
- Güleç-Aslan, Y. (2017). The life experiences of Turkish mothers who have children with an autism spectrum disorder. Advances in Social Sciences Research Journal, 4(6), 149-169. https://doi.org/10.14738/assrj.46.2812
- Hayes, S. A., & Watson, S. L. (2013). 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. Journal of Autism and Developmental Disorders, 43(3), 629-642. https://doi.org/10.1007/s10803-012-1604-y
- Hüseyinzade Şimşek, A. (2017). Çocuk sahibi olma motivasyonları ölçeği Türkçeye uyarlama geçerlik ve güvenirlik çalışması [Adaptation, validity, and reliability study of the childbearing motivations scale in Turkish]. The Journal of Social Science, 4(13), 395-408. https://doi.org/10.16990/SOBIDER.3654
- Ivey, K. J. (2004). What do parents expect? A study of likelihood and importance issues for children with autism spectrum disorders. Focus on Autism and other Developmental Disabilities, 19(1), 27-33. https://doi.org/10.1177/10883576040190010401
- Karaca, A., & Konuk Sener, D. (2021). Spirituality as a coping method for mothers of children with developmental disabilities. International Journal of Developmental Disabilities, 67(2), 112-120. https://doi.org/10.1080/20473869.2019.1603730
- Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147-1160. https://doi.org/10.1007/s10803-007-0491-0
- Liu, S., Deng, T., Chen, M., Ji, Y., Dai, Y., Zhang, T., & Zhang, L. (2023). Parenting confidence and social support as predictors of coping strategies in parents of children newly diagnosed with autism spectrum disorder: A cross-sectional study. Journal of Advanced Nursing, 79(10), 3946-3955. https://doi.org/10.1111/jan.15708
- Meirsschaut, M., Roeyers, H., & Warreyn, P. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mothers’ experiences and cognitions. Research in Autism Spectrum Disorders, 4(4), 661-669. https://doi.org/10.1016/j.rasd.2010.01.002
- Mert, E., Hallıoğlu, O., & Ankaralı, Ç. (2008). Ebeveyn stres indeksi/kısa form (PSI/SF) Türkçe uyarlaması: Bir psikometrik çalışma [Adaptation of the parenting stress index/short form (PSI/SF) to Turkish: A psychometric study]. Türkiye Klinikleri Journal of Medical Sciences, 28, 291-296.
- Navot, N., Jorgenson, A. G., Vander Stoep, A., Toth, K., & Webb, S. J. (2016). Family planning and family vision in mothers after diagnosis of a child with autism spectrum disorder. Autism, 20(5), 605-615. https://doi.org/10.1177/1362361315602134
- Nicholas, D.B, MacCulloch, R., Roberts, W., Zwaigenbaum, L., McKeever, P. (2020). Tensions in maternal care for children, youth, and adults with autism spectrum disorder. Global Qualitative Nursing Research, 19, 7, https://doi.org/10.1177/2333393620907588
- Papadopoulos, D. (2021). Mothers' experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
- Pepperell, T. A., Paynter, J., & Gilmore, L. (2018). Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 188(10), 1392-1404. https://doi.org/10.1080/03004430.2016.1261338
- Prata, J., Lawson, W., & Coelho, R. (2019). Stress factors in parents of children on the autism spectrum: An integrative model approach. International Journal of Clinical Neurosciences and Mental Health, 6(2), 1-9. https://doi.org/10.21035/ijcnmh.2019.6.2
- Rayan, A., & Ahmad, M. (2017). Psychological distress in jordanian parents of children with autism spectrum disorder: The role of positive reappraisal coping. Archives of Psychiatric Nursing, 31(1), 38-42. https://doi.org/10.1016/j.apnu.2016.07.017
- Reddy, G., Fewster, D. L., & Gurayah, T. (2019). Parents’ voices: experiences and coping as a parent of a child with autism spectrum disorder. South African Journal of Occupational Therapy, 49(1), 43–50. http://dx.doi.org/10.17159/2310-3833/2019/vol49n1a7
- Selkirk, C., McCarthy Veach, V., Lian, F., Schimmenti, F., & Leroy, B. (2009). Parents' perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. International Journal of Human Genetics, 18(5), 507-519. https://doi.org/10.1007/s10897-009-9233-0
- Shattnawi, K. K., Bani, S. W. M., Al-Natour, A., Al-Hammouri, M. M., Al-Azzam, M., & Joseph, R. A. (2020). Parenting a child with autism spectrum disorder: Perspective of Jordanian mothers. Journal of Transcultural Nursing: Official Journal of the Transcultural Nursing Society, 32(5), 474-483. https://doi.org/10.1177/1043659620970634
- Şengül Erdem, H. (2023). Otizm spektrum bozukluğu olan birden fazla çocuğa sahip annelerin deneyimleri: yorumlayıcı fenomenolojik analiz çalışması [Experiences of mothers of multiple children with autism spectrum disorder: An interpretative phenomenological analysis study]. Ankara University Faculty of Educational Sciences Journal of Special Education, 24(2), 215-234. https://doi.org/10.21565/ozelegitimdergisi.1013765
- Şimşek Tarsuslu, T., Taşçı, M., & Karabulut, T. (2015). Desire to have other children in families with a chronically disabled child and its effect on the relationship of the parents. Turkish Archives of Pediatrics, 50(3), 163-169. https://doi.org/10.5152/TurkPediatriArs.2015.2795
- The Report of Parliamentary Research Commission. (2020). The report of parliamentary research commission established to determine the prevalence of down syndrome, autism and other developmental disorders and to determine the measures to be taken to solve the problems of ındividuals and their families. https://acikerisim.tbmm.gov.tr/handle/11543/3136
- Tsermentseli, S., & Kouklari, E. C. (2021). Impact of child factors on parenting stress of mothers of children with autism spectrum disorder and intellectual disability: A UK school-based study. Early Child Development and Care, 191(10), 1555-1566. https://doi.org/10.1080/03004430.2019.1658090
- Valicenti McDermott, M., Lawson, K., Seijo, R., Hottinger, K., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 30(13), 1728-1735. https://doi.org/10.1177/0883073815579705
- Walter, S. M., & Smith, M. J. (2016). Mothering a child with autism. Archives of Psychiatric Nursing, 30(5), 600-601. https://doi.org/10.1016/j.apnu.2016.01.016
- White, N., & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17(3), 181-190. https://doi.org/10.1111/j.1468-3148.2004.00197.x