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OTİZMLİ ÇOCUK AİLELERİNİN AİLE YAŞAM KALİTESİ ALGILARI

Year 2015, Volume: 23 Issue: 3, 1363 - 1380, 15.09.2015

Abstract

Araştırmanın amacı, otizmli çocuk ailelerinin “Aile Yaşam Kalitesi (AYK)” algılarının incelenmesidir. Araştırma grubu Türkiye’deki Otistik Çocuklar Eğitim Merkezlerine (OÇEM) devam eden 768 otizmli çocuk ailesinden (annesinden) oluşmaktadır. Otizmli çocuk ailelerinin AYK ve alt alan algılarının ortalamanın üzerinde olduğu, en yüksek algısının “aile etkileşimi” alt alanında, en düşük algının ise “duygusal yeterlik” alt alanında olduğu belirlenmiştir. Ailelerin AYK algılarının yordanmasında 5 regresyon modeli elde edilmiştir. Toplam varyansı en çok açıklayan değişkenin “aile sosyal desteği”, ikinci sırada “sosyo-ekonomik statü (SES)” olduğu gözlenmiştir. Gelir düzeyi, anne çalışma durumu ve yaşanılan yer değişkenlerinin, ailelerin AYK algısını yordama gücünün zayıf olduğu görülmüştür. Anne yaşı, çocuğun cinsiyeti ve yaşı değişkenlerinin ise AYK algısının önemli bir yordayıcısı olmadığı belirlenmiştir. Araştırma bulguları doğrultusunda aile sosyal desteğinin otizmli çocuk ailelerinin AYK algılarının yordanmasında en önemli değişken olduğu, sosyal destekteki artış ölçüsünde AYK algısının arttığı söylenebilir.

References

  • Akın, A., Abacı, A., & Çetin, B., (2007). Bilişötesi Farkındalık Envanteri‘nin Türkçe formu- nun geçerlik ve güvenirlik çalışması. Kuram ve Uygulamada Eğitim Bilimleri / Educatio- nal Sciences: Theory & Practice, 7(2), 655-680.
  • Allik, H., Larsson, J.O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Erişim tarihi: 29 Ağustos 2009, http://www.hqol.com/content/41/1.
  • American Psychiatric Association: APA (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
  • Aznar, A. S., & Castanon, D. G. (2005). Quality of life from the point of view of Latin Ame- rican families: a participative research study. Journal of Intellectual Disability Research, 49(10), 784-788.
  • Bayat, M., (2005). How Family Members’ Perceptions of Influences and Causes of Autism May Predict Assessment of Their Family Quality of Life. Loyola Univesity Chicago. (Un- published Doctoral Dissertation). UMI Microform 3180946.
  • Beach Center on Disability (2006). Family Quality of Life Survey. Beach Center on Disability at the University of Kansas, in partnership with families: University of Kansas, Lawrence KS/USA.
  • Brown, I., Anand, S., Isaacs, B., Baum, N., & Fung, W.L. A. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Di- sabilities, 15(3), 207-230.
  • Brown, R. I., MacAdam-Crisp, J., Wang, M., & 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.
  • Büyüköztürk, Ş. (2007). Sosyal Bilimler İçin Veri Analizi Kitabı. 8. Baskı, Ankara: Pegem Akademi Yayınları.
  • Cantrell, K. K. (2007). Predictors of Quality of Life of Mothers of Children with Intellectual Disabilities. (Unpublished Doctoral Dissertation). University of Denver, USA. UMI Mic- roform 3270532.
  • Campbell, A., Converse, P. E., & Rogers, W.L. (1976). The quality of American life. New- York: The Russell Sage.
  • Caron, J., Tempier, R., Mercier, C., & Léouffre, P. (1997) Components of Social Support and Quality of Life in Severely Mentally Ill, Low-Income Individuals and in The General Po- pulation, 4th Annual Conference of the International Society for Quality of Life Research 4–9 November 1997, Vienna, Austria, Quality of Life Research, 7/8, pp. 613–747.
  • Centers for Disease Control and Preventation (2007). Prevalence of autism spectrum disor- ders: Surveillance summaries, February 9th, 2007. Morbidity and Mortality Weekly Re- port, 56(No. SS-1), 1-40. Erişim tarihi: 30 Ağustos 2009, http://www.cdc.gov/mmwr/pdf/ ss/ss5601.pdf.
  • Crowley, M.J. & Kazdin, A.E. (1998). Child psychosocial functioning and parent quality of life among clinically referred children. Journal of Child and Family Studies, 7(2), 233- 251.
  • Çağlı, U., Akol, P., Karahan, M., Beceren, H.B., Tufur, M., Tokluoğlu, C., Karakay, B., Çakır, V., & Eder, A. (2006). Araştırmacılar Derneği (ARDER) Sosyo-Ekonomik Statü (SES) Ölçegi-2006 Eşli Hane Formu. Araştırmacılar Derneği (ARDER).
  • Davis, K., & 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 & Developmental Disability, 34(2): 153–162.
  • Dillman, D. A. (1991). The design and admınistration of mail surveys, Annual Review of Sociology, 17, 225-249.
  • Enwefa, R. L., Enwefa, S. C., & Jennings, R. (2006). Special Education: Examining the im- pact of poverty on the quality of life of families of children with disabilities. Forum on Public Policy, 1-27.
  • Field, A. (2005). Discovering statistics using SPSS (2th ed.) London: Sage.
  • Hastings, R. P, & Brown, T. (2002). Behavior problems of children with autism, parental self- efficacy, and mental health. American Journal on Mental Retardation, 107(3), 222-232.
  • Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68, 1069-1083.
  • Kaner, S. (2004). Engelli Çocukları Olan Anababaların Algıladıkları Stres, Sosyal Destek ve Yaşam Doyumlarının İncelenmesi. (Bilimsel araştırma projesi kesin raporu). Ankara: Ankara Üniversitesi.
  • Karakaya, B. (2006). Sosyal Tabakalaşma Kuramlarının Türkiye’deki Sosyo-ekonomik Sta- tü Bölümlendirme Çalışmalarıyla Etkileşimi. (Yayımlanmamış Doktora Tezi). İstanbul: Marmara Üniversitesi.
  • Karasar, N. (2003). Bilimsel Araştırma Yöntemi. Ankara: Nobel Yayın Dağıtım.
  • Lindholm, M. M. (2007). Stress, Coping and Quality of Life in Families Raising Children with Autism. (Unpublished Doctoral Dissertation). California School of Professional Psycho- logy Alliant International Univesity. UMI Microform 3299505.
  • Lunsky, Y., & Benson, B. A. (2001). Association Between Perceived Social Support and Stra- in, and Positive and Negative Outcome for Adults with Mild Intellectual Disability. Jour- nal of Intellectual Disability Research, 45(2), 106-114.
  • Mannan, H., Summers, J. A., Turnbull, A. P., & Poston, D. J. (2006) A review of outcome measure in early childhood programs. Journal of Policy and Practice in Intellectual Di- sabilities 3, 219–28.
  • Marcus, L.M., Kunce, L.J., & Schopler, E. (2005). Working with families. In F.R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds), Handbook of Autism and Pervasive Developmental Disorders (3rd edition, pp. 1055-1086). Hoboken, NJ: John Wiley & Sons, Inc.
  • Md-Sidin, S., Sambasivan, M., & Ismail, I. (2010). Relationship between work-family conf- lict and quality of life an investigation into the role of social support. Journal of Manage- rial Psychology, 25(1),58-81.
  • Meral, B. F., & Cavkaytar, A. (2013). Beach Center Aile Yaşam Kalitesi Ölçeğinin Türkçe Uyarlama, Geçerlik ve Güvenirlik Çalışması (Turkish Adaptation, Validity and Reliability Study of the Beach Center Family Quality of Life Scale). Eğitim ve Bilim (Education and Science), 38(170), 48-60.
  • Millî Eğitim Bakanlığı (2010; 2011). Özel Eğitim Rehberlik ve Danışma Hizmetleri Genel Müdürlüğü Kurum ve Öğrenci Sayıları. Ankara: Milli Eğitim Bakanlığı.
  • Millî Eğitim Bakanlığı (2006, değişiklik 2012). Özel Eğitim Hizmetleri Yönetmeliği. Ankara: Milli Eğitim Bakanlığı. Erişim tarihi: 21.09.2014, http://orgm.meb.gov.tr/meb_iys_dos- yalar/2012_10/10111226_ozel_egitim_hizmetleri_yonetmeligi_son.pdf
  • Moore, J. C. (1988). Self/proxy response status and survey response quality. A review of the literatüre. Journal of Official Statistics, 4(2), 155-172.
  • 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.
  • Patterson, J. M., Holm, K. E., & 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.
  • Pittman, J. F., & Lloyd, S. A. (1988). Quality of Family Life, Social Support, and Stress. Jo- urnal of Marriage and Family, 50(1), 53-67.
  • Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning aduls with autism spect- rum disorder, the predictive value of disability and support characteristics. Autism, 10(5), 511-524.
  • Schalock, R. L. (1994). Quality of life, quality enhancement, and quality assurance: Implica- tions for program planning and evaluation in the field of mental retardation and develop- mental disabilities. Evaluation and Training in Mental Retardation and Developmental Disabilities, 29, 90-101.
  • Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism & Other Develop- mental Disabilities, 15(2), 116-128.
  • Shu, B. C., & Lung, F. W. (2005). The effect of support group on the mental health and qua- lity of life for mothers with autistic children. Journal of Intellectual Disability Research, 49(1), 47-53.
  • Shun-Yao Ho, G. (2005). Chinese mmigrant families with developmentally delayed children: Level of acculturation and quality of life. (Unpublished Doctoral Dissertation). Wright Institute Graduate School of Psychology. UMI Microform 3188697.
  • SPSS. (2009). PASW® Statistics 18. Chicago: SPSS Inc.
  • Warter, E. H. (2009). Promoting Resiliency in Families of Individuals Diagnosed with an Au- tism Spectrum Disorders: The Relationship between Parental Beliefs and Family Adap- tation. (Unpublished Doctoral Dissertation). Boston College Lynch Graduate School of Education. UMI Microform 3344740.
  • Werner, S., Edwards, M., Baum, N., Brown, I., Brown, R. I., & 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.

THE PERCEPTIONS OF FAMILY QUALITY OF LIFE OF PARENTS OF CHILDREN WITH AUTISM

Year 2015, Volume: 23 Issue: 3, 1363 - 1380, 15.09.2015

Abstract

The purpose of this study is to examine family quality of life (FQOL) of parents who have children with autism. The research group is consist of 768 parents (mothers) who have children with autism in Autistic Children Education Centers in Turkey. It was determined that the FQOL and sub-domains perceptions of parents who have children with autism was higher than avarage while highest perception in “family interaction” sub-domain and lowest perception in “emotional well-being” sub-domain In the prediction of FQOL perceptions of parents, it was observed that the variable which mostly explained total variance was family social support, secondly explained total variance was socio-economic status (SES). It was seen that family income, labour situation of mother and living area (urban or rural) to prediction of FQOL perceptions of parents were weak. It was determined that the age of mother and the gender and age of children with autism were not important prediction in FQOL perceptions of parents. It can be said, according to results, family social support is the most important variable on improving FQOL of parents who have children with autism.

References

  • Akın, A., Abacı, A., & Çetin, B., (2007). Bilişötesi Farkındalık Envanteri‘nin Türkçe formu- nun geçerlik ve güvenirlik çalışması. Kuram ve Uygulamada Eğitim Bilimleri / Educatio- nal Sciences: Theory & Practice, 7(2), 655-680.
  • Allik, H., Larsson, J.O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Erişim tarihi: 29 Ağustos 2009, http://www.hqol.com/content/41/1.
  • American Psychiatric Association: APA (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
  • Aznar, A. S., & Castanon, D. G. (2005). Quality of life from the point of view of Latin Ame- rican families: a participative research study. Journal of Intellectual Disability Research, 49(10), 784-788.
  • Bayat, M., (2005). How Family Members’ Perceptions of Influences and Causes of Autism May Predict Assessment of Their Family Quality of Life. Loyola Univesity Chicago. (Un- published Doctoral Dissertation). UMI Microform 3180946.
  • Beach Center on Disability (2006). Family Quality of Life Survey. Beach Center on Disability at the University of Kansas, in partnership with families: University of Kansas, Lawrence KS/USA.
  • Brown, I., Anand, S., Isaacs, B., Baum, N., & Fung, W.L. A. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Di- sabilities, 15(3), 207-230.
  • Brown, R. I., MacAdam-Crisp, J., Wang, M., & 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.
  • Büyüköztürk, Ş. (2007). Sosyal Bilimler İçin Veri Analizi Kitabı. 8. Baskı, Ankara: Pegem Akademi Yayınları.
  • Cantrell, K. K. (2007). Predictors of Quality of Life of Mothers of Children with Intellectual Disabilities. (Unpublished Doctoral Dissertation). University of Denver, USA. UMI Mic- roform 3270532.
  • Campbell, A., Converse, P. E., & Rogers, W.L. (1976). The quality of American life. New- York: The Russell Sage.
  • Caron, J., Tempier, R., Mercier, C., & Léouffre, P. (1997) Components of Social Support and Quality of Life in Severely Mentally Ill, Low-Income Individuals and in The General Po- pulation, 4th Annual Conference of the International Society for Quality of Life Research 4–9 November 1997, Vienna, Austria, Quality of Life Research, 7/8, pp. 613–747.
  • Centers for Disease Control and Preventation (2007). Prevalence of autism spectrum disor- ders: Surveillance summaries, February 9th, 2007. Morbidity and Mortality Weekly Re- port, 56(No. SS-1), 1-40. Erişim tarihi: 30 Ağustos 2009, http://www.cdc.gov/mmwr/pdf/ ss/ss5601.pdf.
  • Crowley, M.J. & Kazdin, A.E. (1998). Child psychosocial functioning and parent quality of life among clinically referred children. Journal of Child and Family Studies, 7(2), 233- 251.
  • Çağlı, U., Akol, P., Karahan, M., Beceren, H.B., Tufur, M., Tokluoğlu, C., Karakay, B., Çakır, V., & Eder, A. (2006). Araştırmacılar Derneği (ARDER) Sosyo-Ekonomik Statü (SES) Ölçegi-2006 Eşli Hane Formu. Araştırmacılar Derneği (ARDER).
  • Davis, K., & 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 & Developmental Disability, 34(2): 153–162.
  • Dillman, D. A. (1991). The design and admınistration of mail surveys, Annual Review of Sociology, 17, 225-249.
  • Enwefa, R. L., Enwefa, S. C., & Jennings, R. (2006). Special Education: Examining the im- pact of poverty on the quality of life of families of children with disabilities. Forum on Public Policy, 1-27.
  • Field, A. (2005). Discovering statistics using SPSS (2th ed.) London: Sage.
  • Hastings, R. P, & Brown, T. (2002). Behavior problems of children with autism, parental self- efficacy, and mental health. American Journal on Mental Retardation, 107(3), 222-232.
  • Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68, 1069-1083.
  • Kaner, S. (2004). Engelli Çocukları Olan Anababaların Algıladıkları Stres, Sosyal Destek ve Yaşam Doyumlarının İncelenmesi. (Bilimsel araştırma projesi kesin raporu). Ankara: Ankara Üniversitesi.
  • Karakaya, B. (2006). Sosyal Tabakalaşma Kuramlarının Türkiye’deki Sosyo-ekonomik Sta- tü Bölümlendirme Çalışmalarıyla Etkileşimi. (Yayımlanmamış Doktora Tezi). İstanbul: Marmara Üniversitesi.
  • Karasar, N. (2003). Bilimsel Araştırma Yöntemi. Ankara: Nobel Yayın Dağıtım.
  • Lindholm, M. M. (2007). Stress, Coping and Quality of Life in Families Raising Children with Autism. (Unpublished Doctoral Dissertation). California School of Professional Psycho- logy Alliant International Univesity. UMI Microform 3299505.
  • Lunsky, Y., & Benson, B. A. (2001). Association Between Perceived Social Support and Stra- in, and Positive and Negative Outcome for Adults with Mild Intellectual Disability. Jour- nal of Intellectual Disability Research, 45(2), 106-114.
  • Mannan, H., Summers, J. A., Turnbull, A. P., & Poston, D. J. (2006) A review of outcome measure in early childhood programs. Journal of Policy and Practice in Intellectual Di- sabilities 3, 219–28.
  • Marcus, L.M., Kunce, L.J., & Schopler, E. (2005). Working with families. In F.R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds), Handbook of Autism and Pervasive Developmental Disorders (3rd edition, pp. 1055-1086). Hoboken, NJ: John Wiley & Sons, Inc.
  • Md-Sidin, S., Sambasivan, M., & Ismail, I. (2010). Relationship between work-family conf- lict and quality of life an investigation into the role of social support. Journal of Manage- rial Psychology, 25(1),58-81.
  • Meral, B. F., & Cavkaytar, A. (2013). Beach Center Aile Yaşam Kalitesi Ölçeğinin Türkçe Uyarlama, Geçerlik ve Güvenirlik Çalışması (Turkish Adaptation, Validity and Reliability Study of the Beach Center Family Quality of Life Scale). Eğitim ve Bilim (Education and Science), 38(170), 48-60.
  • Millî Eğitim Bakanlığı (2010; 2011). Özel Eğitim Rehberlik ve Danışma Hizmetleri Genel Müdürlüğü Kurum ve Öğrenci Sayıları. Ankara: Milli Eğitim Bakanlığı.
  • Millî Eğitim Bakanlığı (2006, değişiklik 2012). Özel Eğitim Hizmetleri Yönetmeliği. Ankara: Milli Eğitim Bakanlığı. Erişim tarihi: 21.09.2014, http://orgm.meb.gov.tr/meb_iys_dos- yalar/2012_10/10111226_ozel_egitim_hizmetleri_yonetmeligi_son.pdf
  • Moore, J. C. (1988). Self/proxy response status and survey response quality. A review of the literatüre. Journal of Official Statistics, 4(2), 155-172.
  • 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.
  • Patterson, J. M., Holm, K. E., & 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.
  • Pittman, J. F., & Lloyd, S. A. (1988). Quality of Family Life, Social Support, and Stress. Jo- urnal of Marriage and Family, 50(1), 53-67.
  • Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning aduls with autism spect- rum disorder, the predictive value of disability and support characteristics. Autism, 10(5), 511-524.
  • Schalock, R. L. (1994). Quality of life, quality enhancement, and quality assurance: Implica- tions for program planning and evaluation in the field of mental retardation and develop- mental disabilities. Evaluation and Training in Mental Retardation and Developmental Disabilities, 29, 90-101.
  • Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism & Other Develop- mental Disabilities, 15(2), 116-128.
  • Shu, B. C., & Lung, F. W. (2005). The effect of support group on the mental health and qua- lity of life for mothers with autistic children. Journal of Intellectual Disability Research, 49(1), 47-53.
  • Shun-Yao Ho, G. (2005). Chinese mmigrant families with developmentally delayed children: Level of acculturation and quality of life. (Unpublished Doctoral Dissertation). Wright Institute Graduate School of Psychology. UMI Microform 3188697.
  • SPSS. (2009). PASW® Statistics 18. Chicago: SPSS Inc.
  • Warter, E. H. (2009). Promoting Resiliency in Families of Individuals Diagnosed with an Au- tism Spectrum Disorders: The Relationship between Parental Beliefs and Family Adap- tation. (Unpublished Doctoral Dissertation). Boston College Lynch Graduate School of Education. UMI Microform 3344740.
  • Werner, S., Edwards, M., Baum, N., Brown, I., Brown, R. I., & 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.
There are 44 citations in total.

Details

Other ID JA43CD82KB
Journal Section Review Article
Authors

Bekir Fatih Meral This is me

Atilla Cavkaytar This is me

Publication Date September 15, 2015
Published in Issue Year 2015 Volume: 23 Issue: 3

Cite

APA Meral, B. F., & Cavkaytar, A. (2015). THE PERCEPTIONS OF FAMILY QUALITY OF LIFE OF PARENTS OF CHILDREN WITH AUTISM. Kastamonu Education Journal, 23(3), 1363-1380.

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