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SYSTEMATIC REVIEW ON FAMILY QUALITY OF LIFE OF FAMILIES OF CHILDREN WITH INTELLECTUAL DISABILITIES

Yıl 2021, 30. Ulusal Özel Eğitim Kongresi Özel Sayısı, 38 - 83, 22.09.2021
https://doi.org/10.19171/uefad.837001

Öz

This research presents a systematic review of studies conducted on the perceptions of family quality of life of families of children with intellectual disabilities. The study adopted a descriptive qualitative systematic compilation design. Data consisted of articles that were published between January 2015 and February 2021 and available on the national database of Turkey (DergiPark) and international databases (EBSCOHost, Elsevier Science Direct, ERIC and Google academic) and that fit the criteria of the current study. Induction analysis was used to analyse the data. The findings were distributed according to the years, goals, methods, data collection tools, results, and recommendations. It was believed that this systematic review research will provide a significant impact on the perceptions of the families of their quality of life on the education and psychological support that will be provided to families of children with intellectual disabilities.

Kaynakça

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ZİHİNSEL YETERSİZLİĞİ OLAN ÇOCUK AİLELERİNİN AİLE YAŞAM KALİTESİNE İLİŞKİN SİSTEMATİK BİR DERLEME

Yıl 2021, 30. Ulusal Özel Eğitim Kongresi Özel Sayısı, 38 - 83, 22.09.2021
https://doi.org/10.19171/uefad.837001

Öz

Bu araştırmanın amacı, zihinsel yetersizliği olan çocuğa sahip ailelerin aile yaşam kalitesi algılarının ele alındığı araştırmaların sistematik derleme yapılarak incelenmesidir. Araştırmanın yöntemi, betimsel tipte nitel sistematik derlemedir. Araştırmanın amacı çerçevesinde, Ocak 2015- Şubat 2021 yılları, ulusal veri tabanı (DergiPark) ve uluslararası veri tabanlarında (EBSCOHost, Elsevier Science Direct, ERIC ve Google Akademik) belirlenen ölçütlere göre yapılmış araştırmaların çıkarımı yapılmıştır. Araştırmada elde edilen verilerin analizinde, tümevarımsal analiz sonucu elde edilen betimsel analiz kullanılmıştır. Araştırmanın sonucunda incelenen araştırmaların; yıllara, amaçlarına, yöntemlerine, veri toplama araçlarına, sonuçlarına ve önerilerine göre dağılımı verilerek konu alanında farkındalık geliştirilmiştir. Yapılan bu sistematik derleme araştırmasının zihinsel yetersizliğe sahip olan ailelere verilecek eğitimlerde ve psikolojik destekte ailelerin aile yaşam kalitesinin önemli etkisinin olduğu yönünde kaktı sağlayacağı düşünülmektedir.

Kaynakça

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  • Hu, X., Wang, M., & Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56(1), 30-44. https://doi.org/10.1111/j.1365-2788.2011.01391.x
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  • Lunsky, Y., & Benson, B. A. (2001). Association between perceived social support and strain, and positive and negative outcome for adults with mild intellectual disability. Journal of Intellectual Disability Research, 45(2), 106–114. https://doi.org/10.1046/j.1365-2788.2001.00334.x
  • Mas, J. M., Baqués, N., Balcells-Balcells, A., Dalmau, M., Giné, C., Gràcia, M., & Vilaseca, R. (2016). Family quality of life for families in early intervention in Spain. Journal of Early Intervention, 38(1), 59–74. https://doi.org/10.1177/1053815116636885
  • McFelea, J.T. (2007). Psychometric evaluation of an instrument for assessing policy outcomes for families with children who have severe developmental disabilities: The Beach Center Family Quality of Life Scale [Unpublished Doctoral Dissertation]. Old Dominion University.
  • McFelea, J. T., & 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. (2011). Gelişimsel yetersizliği olan çocuk annelerinin aile yaşam kalitesi algılarının incelenmesi (Yayın No. 298176) [Doktora tezi, Anadolu Üniversitesi]. YÖK. https://tez.yok.gov.tr
  • Meral, B. F., & Cavkaytar, A. (2013). Beach center aile yaşam kalitesi ölçeği’nin Türkçe uyarlama, geçerlik ve güvenirlik çalışması. Eğitim ve Bilim, 38(170).
  • Miles, M. B., & Huberman, A. M. (2015). Nitel veri analizi (S. Akbaba Altun & A. Ersoy, Çev.). Pegem Akademi. (Eserin orijinali 1994' te yayımlanmıştır.)
  • Milgram, N. A., & Atzil, M. (1988). Parenting stres in raising autistic children. Journal of Autism and Developmental Disorders. 18(3), 415–424. https://doi.org/10.1007/BF02212196
  • Misura, A. K., & Memisevic, H. (2017). Quality of life of parents of children with intellectual disabilities in Croatia. Journal of Educational and Social Research, 7(2), 43–48. https://doi.org/10.5901/jesr.2017.v7n2p43
  • Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2010). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. International Journal of Surgery, 8(5), 336–341. https://doi.org/10.1016/j.ijsu.2010.02.007
  • Özsoy, S. A., Özkahraman, A. G. Ş., & Çallı, Y. H. F. (2006). Zihinsel engelli çocuk sahibi ailelerin yaşadıkları güçlüklerin incelenmesi. Sosyal Politika Çalışmaları Dergisi, 9(9), 69-78.
  • Özyurt, Ö. (2011). Hafif zihinsel engelli çocuğu olan annelerin algıladıkları aile işleyişi ve aile yaşam kalitesinin sosyo-demografik değişkenler açısından incelenmesi (Yayın No. 278762) [Yüksek lisans tezi, Maltepe Üniversitesi]. YÖK. https://tez.yok.gov.tr
  • Parish, S. L., Pomeranz, A., Hemp, R., Rizzola, M. C., & Braddock, D. (2001). Family support for persons with developmental disabilities in the US: Status and trends (Policy research brief). University of Minnesota, Institute on Community Integration, Minneapolis, MN.
  • Park, J., Hoffman, L., Marquis, J., Turnbull, A., Poston, D., Mannan, H., Wang, M., & 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. https://doi.org/10.1046/j.1365-2788.2003.00497.x
  • Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of Marriage and Family, 64(2), 349–360. https://doi.org/10.1111/j.1741-3737.2002.00349.x
  • Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328.
  • Rillotta F., Kirby N., & Shearer J. (2010) A comparison of two family quality of life measures: An Australian study. In R. Kober (Ed.), Enhancing the Quality of Life of People with Intellectual Disabilities (pp. 305-348). Springer, Dordrecht. https://doi.org/10.1007/978-90-481-9650-0_17
  • Rodrigues, S. A., Fontanella, B. J. B., Avo, L. R. S., Germano, C. M. R., & Melo, D. G. (2018). A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 32(2), 413–426. https://doi.org/10.1111/jar.12539
  • Roth, D., & Brown, I. (2016). Social and cultural considerations in family quality of life: Jewish and Arab Israeli families’child-raising experiences. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 68–77. https://doi.org/10.1111/jppi.12208
  • Samuel, P. S., Rillotta, F., & 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 program planning, 17(2), 121-131. https://doi.org/10.1016/0149-7189(94)90049-3
  • Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism and Other Developmental Disabilities, 15(2), 116–128. https://doi.org/10.1177/108835760001500207
  • Schmidt, J., Schmidt, M., & Brown, I. (2017). Quality of life among families of children with intellectual disabilities: A Slovene study. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 87–102. https://doi.org/10.1111/jppi.12188
  • Seligman, M., & Darling, R. (2007). Ordinary families, special children. The Guilford Press.
  • Seltzer, M., Floyd, F., & Hindes, A. (2004). Research methods in intellectual disabilities: The family context. In E. Emerson, C. Hatton, T. Thompson & T. R. Parmenter (Eds.), The International Handbook of Applied Research in Intellectual Disabilities (pp. 237–260). West Sussex, England: John Wiley & Sons. doi: 10.1002/9780470713198
  • Şengün, S. B., & Köksal, O. (2019). Gelişimsel yetersizliği olan çocuk annelerinin çocuklarını kabul reddi ve aile yaşam kalitesi. Turkish Studies-Social Sciences, 14(4), 1775-1785. http://dx.doi.org/10.29228/TurkishStudies.24792
  • Staunton, E., Kehoe, C., & Sharkey, L. (2020). Families under pressure: Stress and quality of life in parents of children with an intellectual disability. Irish Journal of Psychological Medicine, 1-8. https://doi.org/10.1017/ipm.2020.4
  • Svraka, E., Loga, S., & 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. https://doi.org/10.1111/j.1365-2788.2011.01434.x
  • Taub, T., & Werner, S. (2016). What support resources contribute to family quality of life among religious and secular Jewish families of children with developmental disability? Journal of Intellectual and Developmental Disability, 41(4), 348–359. https://doi.org/10.3109/13668250.2016.1228859
  • Turnbull, A.P., Turnbull, R., Poston, D., Beegle, G., Blue-Banning, M., Diehl, K., Frankland, C., Mische Lawson, L., Lord, L., Marquis, J., Park, J., Stowe, M., & Summers, J.A. (2004). Enhancing quality of life of families of children and youth with disabilities in the United States. In A.P. Turnbull, I., Brown, & H.R. Turnbull (Eds.), Family quality of life: An international perspective (pp. 51-100). American Association on Mental Retardation.
  • Turnbull, A. P., Brown, I., & Turnbull, H. R. (Eds.). (2004). Families and people with mental retardation and quality of life: International perspectives. Aamr.
  • Turnbull, A. P., Marquis, J. G., Hoffman, L., Poston, D. J., Summers, J. A., Mannan, H., & Wang, M. (2005). A new tool assessing family oucomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Manuscript submitted for publication.
  • Turnbull, A. P., & Turnbull, H. R. (2001). Families, professionals, and exceptionality: Collaborating for empowerment. Prentice Hall.
  • Vanderkerken, L., Heyvaert, M., Onghena, P., & Maes, B. (2018). Quality of life in Flemish families with a child with an intellectual disability: a multilevel study on opinions of family member and the impact of family member and family characteristics. Applied Research in Quality of Life, 13, 779–802. https://doi.org/10.1007/s11482-017-9558-z
  • Vanderkerken, L., Heyvaert, M., Onghena, P., & Maes, B. (2019). The relation between family quality of life and the family-centered approach in families with children with an intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 16(4), 296–311. https://doi.org/10.1111/jppi.12317
  • Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D. J., Mannan, H., & Turnbull, R. (2004). Severity of disability and income as predictors of parents' satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities, 29(2), 82-94. https://doi.org/10.2511/rpsd.29.2.82
  • Yıldız, G., & 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.
  • Yıldırım, F., & Conk, Z. (2005). Zihinsel yetersizliği olan çocuğa sahip anne/babaların stresle başa çıkma tarzlarına ve depresyon düzeylerine planlı eğitimin etkisi. CÜ Hemşirelik Yüksekokulu Dergisi, 9(2), 1-10.
  • Zuna, N. I., Turnbull, A., & Summers, J. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31. https://doi.org/10.1111/j.1741-1130.2008.00199.x
Toplam 86 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Bölüm Makaleler
Yazarlar

İpek Gülsün 0000-0001-9182-407X

Atilla Cavkaytar 0000-0001-8067-1602

Yayımlanma Tarihi 22 Eylül 2021
Gönderilme Tarihi 7 Aralık 2020
Yayımlandığı Sayı Yıl 2021 30. Ulusal Özel Eğitim Kongresi Özel Sayısı

Kaynak Göster

APA Gülsün, İ., & Cavkaytar, A. (2021). ZİHİNSEL YETERSİZLİĞİ OLAN ÇOCUK AİLELERİNİN AİLE YAŞAM KALİTESİNE İLİŞKİN SİSTEMATİK BİR DERLEME. Journal of Uludag University Faculty of Education, 34(30. Ulusal Özel Eğitim Kongresi Özel Sayısı), 38-83. https://doi.org/10.19171/uefad.837001