Experiences of Mothers of Multiple Children with Autism Spectrum Disorder: An Interpretative Phenomenological Analysis Study

Yıl 2023, , 215 - 234, 01.06.2023

Hatice Şengül Erdem

https://doi.org/10.21565/ozelegitimdergisi.1013765

Cited By: 1

Öz

Introduction: This study aimed to investigate the experiences of mothers of multiple children with autism spectrum disorder (ASD).
Method: Nine mothers of multiple children with ASD participated in the research, designed as an interpretative phenomenological analysis study, and data were collected through semi-structured interviews. In the data analysis, the interpretative phenomenological analysis method was employed to reveal the mothers’ personal statements and emotional reflections in depth.
Findings: As a result of the analysis, three main themes were reached, the center of life: Being a mother of two children with autism, gradually increasing isolation, and empowerment attempts. In line with the findings, mothers continue their lives by putting their children with ASD at the center, and they become increasingly lonely in social life. Mothers experience difficulty in maintaining their daily lives, have intense worries about the future, think that they lack the support resources they need, and feel that having multiple children with ASD causes transformations in their relationships with their spouses and their social networks, which will increase their loneliness. Furthermore, mothers develop various strategies to empower themselves. These strategies have emerged as religious beliefs, comparing their children with each other or with children with more severe disabilities, and focusing on the minor achievements of their children.
Discussion: There are few studies on the subject, and the experiences of mothers of multiple children with ASD are similar to the findings of research investigating the experiences of mothers of multiple children with disabilities or mothers of a child with ASD.
Conclusion and Recommendations: Whereas mothers of multiple children with ASD experience intense social isolation and put the “motherhood role” at the center of their lives, on the one side, they feel obliged to empower themselves and develop some strategies to this end, on the other side. According to the study findings, it is suggested that arrangements are needed to facilitate the lives of mothers of multiple children with ASD and the experiences of mothers should be examined with studies to be performed with a larger number of participants.

Anahtar Kelimeler

Mothers, experience, stigmatization, empowerment, autism spectrum disorder (ASD), interpretative phenomenological analysis (IPA)

Otizm Spektrum Bozukluğu Olan Birden Fazla Çocuğa Sahip Annelerin Deneyimleri: Yorumlayıcı Fenomenolojik Analiz Çalışması

Öz

Giriş: Bu çalışmada, otizm spektrum bozukluğu (OSB) olan birden fazla çocuğa sahip annelerin deneyimlerinin derinlemesine incelenmesi amaçlanmıştır.
Yöntem: Yorumlayıcı fenomenolojik analiz çalışması olarak desenlenen çalışmaya OSB olan birden fazla çocuğa sahip dokuz anne katılmış ve veriler yarı-yapılandırılmış görüşmeler yoluyla toplanmıştır. Verilerin analizinde annelerin kişisel söylemlerinin ve duygusal yansımalarının derinlemesine ortaya konabilmesi için yorumlayıcı fenomenolojik analiz yöntemi kullanılmıştır.
Bulgular: Analiz sonucunda yaşamın merkezi: İki otizmli çocuk annesi olmak, gittikçe artan izolasyon ve güçlenme çabaları olmak üzere üç ana temaya ulaşılmıştır. Bulgulara göre anneler yaşamlarını OSB olan çocuklarını merkeze alarak sürdürmekte ve sosyal yaşam içinde gittikçe yalnızlaşmaktadırlar. Anneler, günlük yaşamlarını sürdürmekte zorlanmakta, yoğun bir gelecek endişesi yaşamakta, ihtiyaç duydukları destek kaynaklarından yoksun olduklarını düşünmekte ve OSB olan birden fazla çocuk sahibi olmanın eşleri ile olan ilişkileri ve sosyal ağlarında yalnızlıklarını arttıracak dönüşümlere yol açtığını hissetmektedirler. Bunun yanında anneler güçlenmek için çeşitli stratejiler geliştirmektedirler. Bu stratejiler dini inançlar, çocuklarını birbirleri ile veya daha yoğun yetersizliği olan çocuklarla kıyaslamak ve çocuklarının küçük başarılarına odaklanmak şeklinde ortaya çıkmıştır.
Tartışma: Konu ile ilgili sınırlı çalışma olmakla birlikte OSB tanılı birden fazla çocuğu olan annelerin deneyimleri, yetersizliği olan birden fazla çocuğa sahip veya OSB tanılı bir çocuğu olan annelerin deneyimlerini araştıran çalışma bulguları ile benzerlik göstermektedir.
Sonuç ve Öneriler: OSB olan birden fazla çocuğa sahip olan anneler bir yandan yoğun bir sosyal izolasyon yaşayıp “annelik rolünü” yaşamlarının merkezine alırken bir yandan da kendilerini güçlü kılmak zorunda hissetmekte ve bunun için bazı stratejiler geliştirmektedirler. Araştırma bulgularına göre OSB olan birden fazla çocuğa sahip annelerin yaşamlarını kolaylaştıracak düzenlemeler gerektiği ve annelerin deneyimlerinin daha büyük katılımcı sayısı ile yapılacak çalışmalarla incelenmesi önerilmektedir.

Anahtar Kelimeler

Anneler, deneyim, etiketlenme, güçlenme, otizm spektrum bozukluğu (OSB), yorumlayıcı fenomenolijik analiz (YFA)

Kaynakça

• American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5.bs.). Washington, DC: American Psychiatric Association.
• Bernier, A.S., & McCrimmon, A.W. (2021). Attitudes and perceptions of muslim parents toward their children with autism: A systematic review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-021-00256-9
• Biggerstaff, D., & Thompson, A. R. (2008). Interpretative Phenomenological Analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5(3), 214-224. https://doi.org/10.1080/14780880802314304
• Bilgin, H., & Küçük, L. (2010). Raising an autistic child: perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing : Official Publication of the Association of Child and Adolescent Psychiatric Nurses, Inc, 23(2), 92–99. https://doi.org/10.1111/j.1744-6171.2010.00228.x
• Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers' lived experience of stigma: The voice of families with a child on the autism spectrum. Health & Social Care in the Community, 25(1), 224–233. https://doi.org/10.1111/hsc.12297
• Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207. https://doi.org/10.1177/001440290507100205
• Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into Practice, 39(3), 124-130. https://doi.org/10.1207/s15430421tip3903_2
• Creswell, J. W. (2012). Educational research: Planning, conducting, and evaluating quantitative and qualitative research (4. bs.). Pearson.
• Dale, E., Jahoda, A., & Knott, F. (2006). Mothers' attributions following their child's diagnosis of autistic spectrum disorder: exploring links with maternal levels of stress,depression and expectations about their child's future. Autism: The International Journal of Research and Practice, 10(5), 463–479. https://doi.org/10.1177/1362361306066600
• Değirmenci, G.Y. (2019). “Summer doesn’t come with a single rose”: A qualitative research of Turkish Mothers’ social support systems who have a child with ASD. Toplum ve Sosyal Hizmet, 30(2), 519-537. https://doi.org/10.33417/tsh.572
• DePape, A. M., & Lindsay, S. (2015). Parents' experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. https://doi.org/10.1177/1049732314552455
• Ekas, N.V., Whitman, T.L., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39(5), 706–719. https://doi.org/10.1007/s10803-008-0673-4
• Fernańdez-Alcántara, M., García-Caro, M. P., Pérez-Marfil, M. N., Hueso-Montoro, C., Laynez-Rubio, C., & Cruz-Quintana, F. (2016). Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD). Research in Developmental Disabilities, 55, 312–321. https://doi.org/10.1016/j.ridd.2016.05.007
• Furrukh, J., & Anjum, G. (2020) Coping with autism spectrum disorder (ASD) in Pakistan: A phenomenology of mothers who have children with ASD. Cogent Psychology, 7(1), 1728108. https://doi.org/10.1080/23311908.2020.1728108
• Gobrial, E. (2018). The lived experiences of mothers of children with the autism spectrum disorders in Egypt. Social Sciences, 7(8), 1-11. https://doi.org/10.3390/socsci7080133 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.
• Ha, J.-H., Hong, J., Seltzer, M. M., & Greenberg, J. S. (2008). Age and gender differences in the well-being of midlife and aging parents with children with mental health or developmental problems: Report of a national study. Journal of Health and Social Behavior, 49(3), 301–316. https://doi.org/10.1177/002214650804900305
• Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25(2), 98–109. https://doi.org/10.1177/1088357610361344
• Jegatheesan, B., Fowler, S., & Miller, P. (2010). From symptom recognition to services: how South Asian Muslim immigrant families navigate autism. Disability & Society, 25, 797-811. https://doi.org/10.1080/09687599.2010.520894
• Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390-397. https://doi.org/10.1111/j.1468-3148.2010.00555.x
• Kimura, M., & Yamazaki, Y. (2013). The lived experience of mothers of multiple children with intellectual disabilities. Qualitative Health Research, 23(10), 1307–1319. https://doi.org/10.1177/1049732313504828
• Kimura, M., & Yamazaki, Y. (2019). Having another child without intellectual disabilities: Comparing mothers of a single child with disability and mothers of multiple children with and without disability. Journal of Intellectual Disabilities: JOID, 23(2), 216–232. https://doi.org/10.1177/1744629517749129
• Kimura, M., Yamazaki, Y., Mochizuki, M., & Omiya, T. (2010). Can I have a second child? Dilemmas of mothers of children with pervasive developmental disorder: A qualitative study. BMC Pregnancy and Childbirth, 10(1), 69. https://doi.org/10.1186/1471-2393-10-69
• Koydemir, S., & Tosun, Ü. (2009). Impact of autistic children on the lives of mothers. Procedia Social and Behavioral Sciences, 1(1), 2534-2540. https://doi.org/10.1016/j.sbspro.2009.01.447
• Lutz, H. R., Patterson, B. J., & Klein, J. (2012). Coping with autism: a journey toward adaptation. Journal of Pediatric Nursing, 27(3), 206–213. https://doi.org/10.1016/j.pedn.2011.03.013
• Miles, M. B. & Huberman, M. A. (1994). An Expanded Sourcebook Qualitative Data Analysis (2nd Edition). Sage Publication.
• Munroe, K., Hammond, L., & Cole, S. (2016) The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: An interpretive phenomenological analysis. Disability & Society, 31(6), 798-819. https://doi.org/10.1080/09687599.2016.1200015
• 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, 7, 2333393620907588. https://doi.org/10.1177/2333393620907588
• Orsmond, G. I., Lin, L. Y., & Seltzer, M. M. (2007). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. Intellectual and Developmental Disabilities, 45(4), 257–270. https://doi.org/10.1352/19349556(2007)45[257:MOAAAW]2.0.CO;2
• Patton, M. Q. (2002). Qualitative research and evaluation methods (3. bs.). Sage.
• 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
• 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, 43-50. http://dx.doi.org/10.17159/2310-3833/2019/vol49n1a7
• Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual and Developmental Disability, 37(4), 294-302. https://doi.org/10.3109/13668250.2012.736614
• Samadi S. A. (2020). Parental beliefs and feelings about autism spectrum disorder in Iran. International Journal of Environmental Research and Public Health, 17(3), 828. https://doi.org/10.3390/ijerph17030828
• Sim, A., Vaz, S., Cordier, R., Joosten, A., Parsons, D., Smith, C., & Falkmer, T. (2018). Factors associated with stress in families of children with autism spectrum disorder. Developmental Neurorehabilitation, 21(3), 155–165. https://doi.org/10.1080/1 7518423.2017.1326185
• Smith J. A., & Osborn, M. (2008) Interpretative phenomenological analysis. J. A. Smith (Ed.) Qualitative psychology: A practical guide to research methods içinde (s. 53-80). Sage.
• Smith J. A., & Eatough, V. (2006) Interpretative phenomenological analysis. G. Breakwell, S. Hammond, C. Fife-Schaw ve J.A. Smith (Ed). Research methods in psychology içinde (s. 322-341). Sage.
• Smith, J.A., Jarman, M., & Osborne, M. (1999) .Doing interpretative phenomenological analysis. M. Murray ve K. Chamberlain (Ed.). Qualitative health psychology: Theories and methods içinde (s. 218-241). Sage.
• Smith, J. A. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5(1), 9-27. https://doi.org/10.1080/17437199.2010.5106597
• Stanford, C. E., Hastings, R. P., Riby, D. M. Heather, Archer, J., Page, S. E., & Cebula, K. (2020). Psychological distress and positive gain in mothers of children with autism, with or without other children with neurodevelopmental disorders. International Journal of Developmental Disabilities, https://doi.org/10.1080/20473869.2020.181234
• Töret, G., Özdemir, S. Gurel-Selimoğlu, Ö., & Özkubat, U. (2014). Otizmli çocuğa sahip olan ebeveynlerin görüşleri: Otizm tanımlamaları ve otizmin nedenleri [Opinions of Turkish parents of children with autism: autism definition and causes of the autism]. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 15(1), 1-14. https://doi.org/10.1501/Ozlegt_0000000189
• Yassıbaş, U., & Çolak, A. (2019). Otizm spektrum bozukluğu olan çocuğa sahip anne-babaların yaşam deneyimlerine derinlemesine bakış [An in-depth analysis of the life experiences of parents with children with autism spectrum disorder]. Eğitim ve Bilim, 44(2), 435-467. http://dx.doi.org/10.15390/EB.2019.7366
• Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: the experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083. https://doi.org/10.1177/1049732308320112.