‘’Tek Bir Gülle Yaz Gelmiyor’’ OSB Olan Çocuğa Sahip Türk Annelerin Sosyal Destek Sistemleri Üzerine Nitel Bir Araştırma

Anne olmak kadınlar için psikolojik, fizyolojik ve sosyolojik olmak üzere çok yönlü değişimleri içeren ciddi bir yaşam olayıdır. Otizm spektrum bozukluğu (OSB) olan bir çocuğa anne babalık etmek çoğu zaman anksiyete ve depresyon gibi mental sağlık sorunları ile ilişkili görülür. Bu nedenle, araştırmacılar, eğitimciler veya profesyoneller, OSB olan bireylerinin yanı sıra aile üyeleri üzerine de yoğunlaşmıştır. Aileye özel ihtiyaçları olan bir çocuğun katılımı, stresli ve zorlayıcı deneyimler getirebilir. Otizm spektrum bozukluğu olan çocukların annelerinin sosyal destek sistemleri hakkında sahip olunan bilginin oldukça kısıtlı olduğu görülmektedir. Bu çalışmanın amacı iki yönlüdür: ilki kadınların çocuklarına ilişkin bakışaçılarının ve sosyal destek sistemlerinin keşfedilmesi ikinci olarak ise yaşam deneyimlerinin görünür kılınmasıdır. Bu amaçla çocuğu otizm spektrum bozukluğu tanısı almış ve orta yaş grubundan ve düzenli bir işte çalışmayan 11 kadın çalışma grubunu oluşturmuştur. Çalışma nitel araştırma yöntemi kullanılarak yapılandırılmış, yarı yapılandırılmış görüşmeler yoluyla veri toplanmış ve içerik analizi kullanılmıştır. Elde edilen sonuçlar iki ana tema (annenin çocuğa bakış açısı ve sosyal destek sistemleri) içerisinde yorumlanmıştır. Elde edilen bulgulara göre kadınlar çoğunlukla sosyal desteğe sahip değildirler ve zaman içerisinde eşleri, aileleri ve akranları ile bağlarını kaybetmektedirler. Ayrıca çalışmaya katılan kadınların ilk yıllardan başlayarak yalnızlaştıkları ve ihtiyaç duyduklarını ifade ettikleri duygusal yakınlığa sahip olamadıkları görülmektedir. Çalışmada elde edilen bulgular ilgili literatür göz önüne alınarak tartışılmıştır.

Anahtar Kelimeler:

Parenting, ASD, mother, autism spectrum disorder, social support

‘’Summer Doesn’t Come with a Single Rose’’ : A Qualitative Research of Turkish Mothers’ Social Support Systems who Have a Chıld with ASD

Being a mother is defined as a serious life event in which women often experience physical, psychological and sociological changes. Parenting a child diagnosed with autism can be associated with a high risk of presenting mental health problems such as anxiety and depression. Therefore, researchers, educators or professionals have focused on family members, as well as ASD individuals. Involvement of a child with special needs in the family can often bring stressful and challenging experiences. The purpose of this study is twofold; first, to explore their perspectives on children and social support systems of women with children who have autism spectrum disorder (ASD) and second, to unfold their life experiences. The study was structured using qualitative research method. Qualitative interviews were conducted with mothers of children diagnosed with ASD in Ankara, Turkey. Interviews were conducted with 11 middle age, unemployed Turkish mothers. Data was collected through semi-structured interviews and content analysis was used. The results are interpreted in two main themes (perspectives of mothers on their children and social support). According to the research findings, women mostly don’t have social support and they gradually lose connection to their husbands and other family members or peers. Finally, the findings obtained from the study were discussed in the light of the relevant literature.

Keywords:

Parenting, ASD, mother, autism spectrum disorder, social support,

PDF

___

Akmeşe, P. P., Mutlu, A., Günel, M. K. (2007). Serebral paralizili çocukların annelerinin kaygı düzeyinin araştırılması. Çocuk Sağlığı Ve Hastalıkları Dergisi 50, 236–240.
American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (5th Ed.). Arlington, VA: American Psychiatric Publishing.
Bishop, S. L., Richler, J., Cain, A. C., Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal Of Mental Retardation : AJMR, 112(6), 450–61.
Bromley, J., Hare, D. J., Davison, K., Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders. Autism, 8(4), 409–423.
Bultas, M. W., Johnson, N. L., Burkett, K., Reinhold, J. (2016). Translating research to practice for children with autism spectrum disorder: part 2: behavior management in home and health care settings. Journal Of Pediatric Health Care, 30(1), 27–37.
Bünning, M. (2016). The association between social support networks and maternal employment: a comparison of western german, eastern german, and migrant mothers of preschool-aged children. Community, Work And Family, 19(1), 1–19.
Cachia, R. L., Anderson, A., Moore, D. W. (2016). Mindfulness, stress and well-being in parents of children with autism spectrum disorder: a systematic review. Journal Of Child And Family Studies, 25(1), 1–14.
Caplan, P. J. (2010). Mother Blame. In A. O’Reilly (Ed.), Encyclopedia of motherhood (pp. 804–805). Thousand Oaks, CA: Sage.
Carr, T., & Lord, C. (2013). Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder. Autism, 17(4), 405–417.
Çoşkun, Y., and Akkaş, G. (2009). Engelli çocuğu olan annelerin sürekli kaygı düzeyleri ile sosyal destek algıları arasındaki ilişki. Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi, 10(1), 213–227.
Dabrowska, A., and Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and down syndrome. Journal Of Intellectual Disability Research, 54(3), 266–280.
Davies, F., and Harman, B. (2016). A qualitative exploration of mothers who reject playgroup. Australian Social Work, 69(1), 1–13.
Davis, N. O., and Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. Journal Of Autism And Developmental Disorders, 38(7), 1278–1291.
Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain And Development, 35(2), 133–138.
Findler, L. (2000). The role of grandparents in the social support system of mothers of children with a physical disability. Families İn Society: The Journal Of Contemporary Social Services, 81(4), 370–381.
Findler, L., Klein Jacoby, A., Gabis, L. (2016). Subjective happiness among mothers of children with disabilities: the role of stress, attachment, guilt and social support. Research İn Developmental Disabilities, 55, 44–54.
Fischer, J., & Corcoran, K. (1999). Measures For Clinical Practice: A Sourcebook Volume 2 Adults (4th.). New York, Oxford University Press.
Flick, U., Kardorff, E. Von, Steinke, I. (2004). A Companion To Qualitative Research. London, Sage Publications.
Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal Of Family Psychology, 24(4), 449–457.
Hartley, S. L., Papp, L. M., Mihaila, I., Bussanich, P. M., Goetz, G., Hickey, E. J. (2017). Couple conflict in parents of children with versus without autism: self-reported and observed findings. Journal Of Child And Family Studies, 26(8), 2152–2165.
Hartwig, E. K. (2016). Social networks: a village of support for single mothers. Journal Of Family Social Work, 19(1), 22–37.
Hastings, R. (2002). Parental stress and behaviour problems of children with developmental disability. Journal Of Intellectual And Developmental Disability, 27(3), 149–160.
Hastings, R. P., Allen, R., Mcdermott, K., Still, D. (2002). Factors related to positive perceptions in mothers of children with intellectual disabilities. Journal Of Applied Research İn Intellectual Disabilities, 15(3), 269–275.
Hatun, O., Yavuz Birben, F., İnce, Z., Kalkan Yeni, G. (2016). The ticket to heaven: a spiritual resource for coping with disability. Spiritual Psychology And Counseling, 1(2), 209–236.
Henly, J. R., Danziger, S. K., Offer, S. (2005). The contribution of social support to the material well-being of low- income families. J. Marriage Fam, 67(1), 122–140.
Karpat, D., and Girli, A. (2012). Yaygın gelişimsel bozukluk tanılı çocukların anne-babalarının yas tepkilerinin, evlilik uyumlarının ve sosyal destek algılarının incelenmesi. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 13(2), 69–85.
Kearney, P. M., Griffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal Of Advanced Nursing, 34(5), 582–592.
Kırbaş, Z. O., and Özkan, H. (2013). Down sendromlu çocukların annelerinin aile işlevlerini algılama ve sosyal destek düzeylerinin değerlendirilmesi. Journal Of Dr Behcet Uz Children’s Hospital, 3(3), 171–180.
Kinlaw, C. R., Kurtz-Costes, B., Goldman-Fraser, J. (2001). Mothers’ achievement beliefs and behaviors and their children’s school readiness: A Cultural Comparison. Journal Of Applied Developmental Psychology, 22(5), 493–506.
Kümbetoğlu, B. (2015). Sosyolojide ve antropolojide niteliksel yöntem ve araştırma. İstanbul: Bağlam Yayıncılık.
Leahy-Warren, P., Mccarthy, G., Corcoran, P. (2012). First-time mothers: social support, maternal parental self-efficacy and postnatal depression. Journal Of Clinical Nursing, 21(3–4), 388–397.
Lecavalier, L., Leone, S., Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal Of Intellectual Disability Research, 50(3), 172–183.
Lumino, R., Ragozini, G., Van Duijn, M., Vitale, M. P. (2016). A mixed-methods approach for analysing social support and social anchorage of single mothers’ personal networks. Qual Quant, 51(2), 779–797.
Maxwell, V., Barr, O. (2003). A mother’s reflections on raising a child with down syndrome. Journal Of Learning Disabilities, 7(1), 51–64.
Mickelson, K. D., Wroble, M., Helgeson, V. S. (1999). “Why my child?”: parental attributions for children’s special needs. Journal Of Applied Social Psychology, 29(6), 1263–1291.
Montes, G.and Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: a population-based study. Pediatrics, 119(5), 1040 –1046
Nuri, C., Rustıoglu, O., Abıdoglu, U. (2018). Otizmli çocuğu olan ailelerin yaşadığı sorunlar: niteliksel bir araştırma. Yaşam Becerileri Psikoloji Dergisi, 2(3), 97–111.
Oelofsen, N.and Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal Of İntellectual & Developmental Disability, 31(1), 1–12.
Pelchat, D., Levert, M.-J., Bourgeois-Guérin, V. (2009). How do mothers and fathers who have a child with a disability describe their adaptation/ transformation process? Journal Of Child Health Care : For Professionals Working With Children İn The Hospital And Community, 13(3), 239–259.
Pisula, E. (2007). A comparative study of stress profiles in mothers of children with autism and those of children with down’s syndrome. Journal Of Applied Research İn Intellectual Disabilities, 20(3), 274–278.
Riany, Y. E., Cuskelly, M., Meredith, P. (2017). Parenting style and parent–child relationship: a comparative study of ındonesian parents of children with and without autism spectrum disorder (asd). Journal Of Child And Family Studies,26(12), 1–13.
Rogers, M., and Hogan, D. (2003). Family life with children with disabilities : the key role of rehabilitation. Journal Of Marriage And Family, 65(November), 818–833.
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
Sanders, J. L., andMorgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or down syndrome: Implications for intervention. Child & Family Behavior Therapy, 19(4), 15–32.
Siman-Tov, A., andKaniel, S. (2011). Stress and personal resource as predictors of the adjustment of parents to autistic children: a multivariate model. Journal Of Autism And Developmental Disorders, 41(7), 879–890.
Wallander, J. L., Pitt, L. C., Mellins, C. A. (1990). Child functional independence and maternal psychosocial stress as risk factors threatening adaptation in mothers of physically or sensorially handicapped children. Journal Of Consulting And Clinical Psychology, 58(6), 818–824.
Weeks, L. E., Bryanton, O., Kozma, A., Nilsson, T. (2008). Well-being of mid-and later-life mothers of children with developmental disabilities. Journal Of Women & Aging, 20(1/2), 115–130.