OKUL ÖNCESİ DÖNEMDE ZİHİNSEL YETERSİZLİĞİ OLAN ÇOCUK ANNELERİNİN AİLE YAŞAM KALİTESİ ALGILARININ İNCELENMESİ

Yıl 2021, Cilt: 7 Sayı: 27, 134 - 145, 25.06.2021

İpek Gülsün

Öz

Araştırmanın amacı, okul öncesi dönemde zihinsel yetersizliği olan çocuğa sahip annelerin aile yaşam kalitesi algılarının incelenmesidir. Araştırma grubu, An-kara’daki özel eğitim anaokullarına devam eden 40 zihinsel yetersizliği olan çocuk annesinden oluşmaktadır. Araştırmada, annelerin aile yaşam kalitesi algılarını be-lirlemek için “Beach Center Aile Yaşam Kalitesi Ölçeği (BCAYKÖ)” kullanılmıştır. Araştırma, betimsel tarama modeline dayalı olarak gerçekleştirilmiştir. Araştırma sonucunda, annelerin aile etkileşimi ve ebeveynlik alt boyutlarındaki yaşam kalite-sinin yüksek düzeyde olduğu, duygusal yeterlilik, fiziksel/ finansal/ materyal ye-terliliği, yetersizliğe ilişkin destek alt boyutlarında ise yaşam kalitesinin orta dü-zeyde olduğu, toplam aile yaşam kalitesinin ise orta düzeyin üzerinde olduğu so-nucuna ulaşılmıştır.

Anahtar Kelimeler

Aile yaşam kalitesi, anne algısı, zihinsel yetersizliği olan çocuk.

THE EXAMINATION OF THE FAMILY QUALITY OF LIFE PERCEPTIONS OF MOTHERS OF CHILDREN WITH INTELLECTUALLY DISABILITIES IN PRESCHOOL

Öz

The study's goal is to look into the perceptions of family quality of life of mothers who have children with intellectual disabilities in preschool. The study's participants are 40 mothers of children with intellectual disabilities who attend special education kindergartens in Ankara. In the study, "Beach Center Family Qu-ality of Life Scale (BCAYKÖ)" was used to determine the perceptions of the family quality of life of mothers. A descriptive survey model was used in the research. According to research data, mothers have high levels of family quality of life in the sub-dimensions of family interaction and parenting, moderate levels in the sub-dimensions of emotional well-being, physical/ financial/ material well-being, and disability-related support, and a total level of family quality of life that is above the medium level.

Anahtar Kelimeler

Family quality of life, mother perception, children with intellectual disability.

Kaynakça

• Aydıner-Boylu, A. (2007). Ailelerin Yaşam Kalitelerini Etkileyen Bazı Objektif ve Subjektif Göstergelerin İncelenmesi. Yayımlanmamış Doktora Tezi, Hacettepe Üniversitesi Sosyal Bilimler Enstitüsü, Ankara.
• Bailey, D. B., McWilliam, R. A., Drakes, L. A., Heyveler, K., Simeonsson, R. J. ve Spiker, D. (1998). Family out- comes in early intervention: a framework for program evaluation and efficacy research. Exceptional Children, 64: 313–28.
• Balcells-Balcells, A., Gine, C., Guardia-Olmos, J. ve Summers, J. A. (2010). Family quality of life: adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research, 55(12).
• Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., Summers, J. A. ve Mas, J. M. (2019). Impact of supports and partnership on family quality of life. Research in Developmental Disabilities, 85: 50–60. https://doi.org/10.1016/j.ridd.2018.10.006
• Bartelli, M., Bianco, A., Rossi, M., Scuticchio, D. ve Brown, I. (2011). Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy. Journal of Intellectual Disability Research, 55(12): 1136–1150.
• Bayat, M. (2005). How Family Members’ Perceptions of Influences and Causes of Autism May Predict Assessment of Their Family Quality of Life. Unpublished Doctoral Dissertation, Loyola Univesity Chicago.
• Beach Center on Disability. (2003). Family Quality of Life Scale. Lawrence, KS: University of Kansas.
• Blue-Banning, M., Summers, J. A., Franklan, H. C., Nelson, L. L. ve Beegle, G. (2004). Dimensions of family and professional partnerships: constructive guidelines for collaboration. Exceptional Children, 70: 167–84.
• Boehm, T. L. (2017). Predictors of Family Quality of Life Among Parents of Children and Adults with Intellectual Disability.Unpublished Doctoral Dissertation, Graduate School of Vanderbilt University.
• Boehm, T. L. ve Carter, E. W. (2019). Family quality of life and its correlates among parents of children and adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 124(2): 99–115. https://doi.org/10.1352/1944-7558-124.2.99
• Boehm, T. L., Carter, E. W. ve Taylor, J. L. (2015). Family quality of life during the transition to adulthood for individuals with intellectual disability and/or autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 120(5): 395–411. doi.org/10.1352/1944-7558-120.5.395
• Bristol, M. M., Gallaher, J. J. ve Schopler, E. (1988). Mothers and fathers of young developmentally disabled and nondisabled boys: adaptation and spousal support. Developmental Psychology, 24(3): 441–451.
• Brown, I., Anand, S., Isaacs, B., Baum, N. ve Fung, W. L. A. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities. Journal of Developmental and Physical Disabilities, 15(3): 207–230.
• Brown, I. ve Brown, R. (2003). Quality of Life and Disability: An Approach for Community Practitioners. Jessica Kingsley Publishers.
• Brown, I., Petrowski, N., Edwards, M., Isaacs, B. J., Brown, R. I., Baum, N. ve Werner, S. (2010). A Family Quality of Life Approach for Social Workers: Lessons from the Field of Intellectual and Developmental Disabilities. Journal of Social Work, 1–25.
• Brown, R. I., MacAdam-Crisp, J., Wang, M. ve Iarocci, G. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4): 238–245.
• Browne, G. ve Bramston, P. (1996). Quality of life in the families of young people with intellectual disabilities. Australian & New Zealand Journal of Mental Health Nursing, 5(3), 120–130.
• Bumin, G., Günal, A. ve Tükel, Ş. (2008). Anxiety, depression and quality of life inmothers of disabled children. S.D.Ü. Tıp Fakültesi Dergisi, 15(1): 6–11.
• Čagran, B., Schmidt, M. ve Brown, I. (2011). Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia. Journal of Intellectual Disability Research, 55(12): 1164–1175. https://doi.org/10.1111/j.1365-2788.2011.01400.x
• Canarslan, H. ve Ahmetoğlu, E. (2015). Engelli Çocuğa Sahip Ailelerin Yaşam Kalitesinin İncelenmesi. Trakya Üniversitesi Sosyal Bilimler Dergisi, 17(1): 13–31.
• Chou, Y.-C., Lin, L.-C., Chang, A.-L. ve Schalock, R. L. (2007). The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan. Journal of Applied Research in Intellectual Disabilities, 20: 200–2010.
• Clark, M., Brown, R. ve Karrapaya, R. (2011). An initial look at the quality of life of Malaysian families that include children with disabilities. Journal of Intellectual Disability Research, 56(1).
• Davis, K. ve Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2): 153–162.
• Demirhan, H. (2014). Zihinsel engelli ve sınır zeka kapasitesine sahip çocuk ve ergenlerin ebeveynlerinde aile yükü ve yaşam kalitesi. Yayımlanmamış Yüksek Lisans Tezi. Bülent Ecevit Üniversitesi, Zonguldak.
• Duygun, T. ve Sezgin, N. (2003). Zihinsel Engelli ve Sağlıklı Çocuk Annelerinde Stres Belirtileri Stresle Başa Çıkma Tarzları ve Algılanan Sosyal Desteğin Tükenmişlik Düzeyine Olan Etkisi. Türk Psikoloji Dergisi, 18(52): 37–52.
• Ergüner-Tekinalp, B. ve Akkök, F. (2004). The Effects of a Coping Skills Training Program on the Coping Skills, Hopelessness, and Stress Levels of Mothers of Children with Autism. International Journal for the Advancement of Counselling, 26(3): 257–269.
• Gine, C., Gracia, M., Vilaseca, R., Beltran, F. S., Balcells-Balcells, A., Montala, M. D., Adam-Alcocer, A., Pro, M. T., Simo-Pinatella, D. ve Mas Mestre, J. M. (2015). Family Quality of Life for People With Intellectual Disabilities in Catalonia. Journal of Policy and Practice in Intellectual Disabilities, 12(4).
• Güzeloğlu, B. (2019). Özel Gereksinimli Çocuğa Sahip Ebeveynlerin Eş Desteği ve Aile Yaşam Kalitesinin Umutsuzluk ve Stres Düzeyleri İle İlişkisinin İncelenmesi. Yayımlanmamış Yüksek Lisans Tezi. Ankara Üniversitesi Eğitim Bilimleri Enstitüsü, Ankara.
• Hollar, D. (2003). A Holistic Theoretical Model for Examining Welfare Reform: Quality of Life. Public Administration Review, 63(1): 90–99.
• Holloway, S. D., Dominguez-Pareto, I., Cohen, S. R. ve Kuppermann, M. (2014). Whose Job Is It? Everyday Routines and Quality of Life in Latino and Non-Latino Families of Children With Intellectual Disabilities. Journal of Mental Health Research in Intellectual Disabilities, 7(2): 104–125.
• Hu, X., Wang, M. ve Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56: 30–44.
• Hu, X. Y. (2016). Family quality of life and family support for children with disabilities in China. Chinese Journal of Rehabilitation Theory Practice, 22(10): 1227–1231.
• Hu, X. Y., Yue, X. L. ve Jia, R. (2015). Family needs and family quality of life of children with blind and deafness. Disability Research, 3: 23–27.
• Jokinen, N. S. M. (2008). Family Quality of Life in the Context of Aging and Intellectual Disability. Unpublished Doctoral Dissertation, Canada: Graduate Division of Educational Research Calgary, Alberta.
• Karaduman, H. ve Parlar, H. (2020). Gelişimsel Yetersizliğe Sahip Olan ve Normal Gelişim Gösteren Çocuğa Sahip Ebeveynlerin Aile Yaşam Kalitesi Algılarının İncelenmesi. İZÜ Eğitim Dergisi, 2(3): 101–121.
• Kazak, A. ve Marvin, R. S. (1984). Differences, Diffuculties and Adaptatin: Stress and Social Networks in Families With a Handicapped Child. Family Relations, 33: 67–77.
• Klein, D. M. ve White, J. M. (1996). Family Theories: An Introduction. Sage Publications, Inc.
• Lin, J. D., Hu, J., Yen, C. F., Hsu, S. W., Lin, L. P., Loh, C. H., Chen, M. H., Wu, S. R., Chu, C. M., ve Wu, J. L. (2009). Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey. Research in Developmental Disabilities, 30(6): 1448–1458.
• McFelea, J. T. ve Raver, S. (2012). Quality of Life of Families with Children Who Have Severe Developmental Disabilities: A Comparison Based on Child Residence. Communication Disorders & Special Education, 31(2): 3–17.
• Meral, B. F. ve Cavkaytar, A. (2013). Beach Center Aile Yaşam Kalitesi Ölçeği’nin Türkçe Uyarlama, Geçerlik ve Güvenirlik Çalışması. Eğitim ve Bilim, 38(170): 0–0.
• Meral, B.F., Cavkaytar, A., Turnbull, A. P. ve Wang, M. (2013). Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism. Research and Practice for Persons with Severe Disabilities, 38(4): 233–246.
• Meral, B.F. (2011). Gelişimsel Yetersizliği Olan Çocuk Annelerinin Aile Yaşam Kalitesi Algılarının İncelenmesi. Yayımlanmamış Doktora Tezi, Anadolu Üniversitesi Eğitim Bilimleri Enstitüsü, Eskişehir.
• Milgram, N. A. ve Atzil, M. (1988). Parenting stres in raising autistic children. Journal of Autism and Developmental Disabilities. 18: 415–424.
• Özyurt, Ö. (2011). Hafif Zihinsel Engelli Çocuğu Olan Annelerin Algıladıkları Aile İşleyişi ve Aile Yaşam Kalitesinin Sosyo-Demografik Değişkenler Açısından İncelenmesi. Yayımlanmamış Yüksek Lisans Tezi. Maltepe Üniversitesi, Sosyal Bilimler Enstitüsü, İstanbul.
• Park, J., Hoffman, L., Marquis, J., Turnbull, A., Poston, D., Mannan, H., Wang, M. ve Nelson, L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47(4/5): 367–384.
• Patterson, J. M., Holm, K. E. ve Gurney, J. G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology, 13(6): 390–407.
• Rousey, A., Best, S. ve Blacher, J. (1992). Mothers‘ and fathers‘ perceptions of stres and coping with children hwo have severe disabilities. American Journal on Mental Retardation, 97: 99–109.
• Samuel, P. S., Rillotta, F. ve Brown, I. (2012). Review: The development of family quality of life concepts and measures. Journal of Intellectual Disability Research, 56(1): 1– 16. https://doi.org/10.1111/j.1365-2788.2011.01486.x
• Schalock, R. L. (1994). Quality of life, quality enhancement, and quality assurance: Implications for program planning and evaluation in the field of mental retardation and developmental disabilities. Evaluation and Training in Mental Retardation and Developmental Disabilities, 29: 90–101.
• Seligman, M. ve Darling, R. (2007). Ordinary Families, Special Children: A Systems Approach To Childhood Disability. New York: The Guilford Press.
• Şengün, S. B. ve Köksal, O. (2019). Gelişimsel yetersizliği olan çocuk annelerinin çocuklarını kabul reddi ve aile yaşam kalitesi. Turkish Studies-Social Sciences, 14(4): 1775–1785. https://doi.org/10.29228/turkishstudies.24792
• Selçuk, G. (2019). Tarama Yöntemi. Eğitimde Araştırma Yöntemleri, s. 140–161. Ankara: Pegem Akademi.
• Shun-Yao Ho, G. (2005). Chinese immigrant families with developmentally delayed children: Level of acculturation and quality of life. Unpublished Doctoral Dissertation, Wright Institute Graduate School of Psychology.
• Soresi, S., Nota, L. ve Ferrari, L. (2007). Considerations on Supports That Can Increase the Quality of Life of Parents of Children With Disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(4): 248–251.
• Svraka, E., Loga, S. ve Brown, I. (2011). Family quality of life: adult school children with intellectual disabilities in Bosnia and Herzegovina. Journal of Intellectual Disability Research, 1434: 1–8. https://doi.org/10.1111/j.1365-2788.2011.01434.x
• Švraka, E., Loga, S. ve Brown, I. (2011). Family quality of life: adult school children with intellectual disabilities in Bosnia and Herzegovina. Journal of Intellectual Disability Research, 55(12): 1115–1122.
• Toprak, F. (2018). Zihinsel Engelli ve Üstün Yetenekli Çocuğa Sahip Ailelerin Yaşam Doyumları, Yaşam Kaliteleri ve Sosyal Destek Algılarının Karşılaştırılması. Yayımlanmamış Yüksek Lisans Tezi. Hacettepe Üniversitesi Sosyal Bilimler Enstitüsü, Ankara.
• Tunç, M. (2011). Zihinsel Engelli Çocuğa Sahip Annelerin Yaşam Kalitesini Etkileyen Etmenler: Yenimahalle İlçesi Örneği. Yayımlanmamış yüksek lisans tezi. Hacettepe Üniversitesi Sosyal Bilimler Enstitüsü, Ankara.
• Turnbull, A., Turnbull, H. R., Poston, D., Beegle, G. ve M., B.-B. (2004). Enhancing quality of life of families of children and youth with developmental disabilities in the United States. Families and People with Mental Retardation and Quality of Life: Inter- national Perspectives, s. 51-100. Washington, DC: American Association on Mental Retardation.
• Turnbull, A. P. ve Turnbull, H. R. (2001). Families, Profes- sionals and Exceptionality. Merrill Prentice Hall, New Jersey, NJ.
• Wang, M. (2004). Perspectives of Fathers and Mothers in Assessing FQOL in Early Intervention Programs. USA: Kansas University.
• Werner, S., Edwards, M., Baum, N., Brown, I., Brown, R. I. ve Isaacs, B. J. (2009). Family quality of life among families with a member who has an intellectual disability: an explo- ratory examination of key domains and dimensions of the revised FQOL Survey. Journal of Intellectual Disability Research, 53: 501–11.
• Willoughby, J. C. ve Glidden, L. M. (1995). Fathers helping out: Shared childcare and marital satisfaction of parents of children with disabilities. American Journal on Mental Retardation, 99(4): 399–406.
• Yıldız, G. ve Cavkaytar, A. (2020). Effectiveness of the parent training program for supporting the preparation of individuals with intellectual disability for adulthood based on mothers’ quality of life perceptions. Education and Training in Autism and Developmental Disabilities, 55(2): 201–214.
• Zeng, S., Hu, X., Zhao, H. ve Stone-MacDonald, A. K. (2020). Examining the relationships of parental stress, family support and family quality of life: A structural equation modeling approach. Research in Developmental Disabilities, 96. https://doi.org/10.1016/j.ridd.2019.103523