Araştırma Makalesi
BibTex RIS Kaynak Göster

A family centered training model proposal to meet the needs of parents having multiple disabled child

Yıl 2019, Cilt: 11 Sayı: 2, 168 - 182, 20.12.2019
https://doi.org/10.20489/intjecse.670476

Öz

The purpose of this study is to identify the needs of parents with children that have multiple disabilities in early childhood and to suggest a family-centered training model for parents in line with these needs. The research was designed with qualitative research method. Three mothers, who have children with multiple disabilities, living in Mamak district of Ankara province, participated in the research. The data were collected in a group meeting through face-to-face interviews and analyzed by content analysis. The common needs of the mothers who participated in the group meetings were getting in- formation about the disabilities of the children, learning how to increase the physiotherapy hours for them, getting the entire diaper costs of the children from the Social Security Institution and getting help about their transportation to the hospital. As for the personal needs, the mothers desired to get information about the parent–teacher association, epilepsy, visual impairment, hip dislocation and its treatment, shunt use and space therapy and they also wanted to learn whether robots would be useful for their children or not. In line with these results, it can be said that a screening study based on quantitative data should be carried out for further studies through wider participation with children that have different disabilities.

Kaynakça

  • Akçamete, G. (1992). Çoklu yetersizliği olan öğrenciler, Ankara Üniversitesi Eğitim Bilimleri Fakültesi Dergisi, 24 (1), 145-150.
  • Ayyıldız, E. (2007). Çok engelli çocuklarda erken müdahale, Özel Eğitim ve Rehabilitasyon Dergisi, 3(10), 50-52.
  • Bahçıvanoğlu-Yazıcı, A., & Akçin, N. (2014). Describing Mother's Opinions About Development Process of Their Children with Multiple Disability, Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi (KEFAD), 15(2), 335-356.
  • Bailey, D. B., Raspa, M., & Fox, L. C. (2012). What is the future of family outcomes and family centered services? Topics in Early Childhood Special Education, 31(4), 216 223. DOI: 10.1177/0271121411427077
  • Bailey, D. B., Raspa, M., Humphreys, B. P., & Sam, A. M. (2011). Promoting family outcomes in early intervention. In J. M. Kauffman ve Hallahan (Ed.). Handbook of special education (pp. 668-684). New York, NY: Routledge.
  • Berger, H. E. (2008). Parents as partners in education: families and school working together. New Jersey: Pearson Merrill Prentice Hall.
  • Bernstein, M. E., & Barta, L. (1988). What do parents want in parent education?. American Annals of the Deaf, 133(3), 235-246. DOI: 10.1353/aad.2012.0833
  • Berryhill, F., L., (2013). Family-centered practices ve positive behavior support: a qualitative examination of families’ perspectives of managing preschoolers’ challenging behaviors, (Unpublished Doctorate Thesis) Faculty of the Graduate School Tennessee Technological University, Tennessee
  • Best, J. S., Wolff-Heller, K., & Bigge, J. L. (2010). Teaching individuals with physcial or multiple disabilities (6th ed.). USA: Pearson.
  • Bingöler Pekcici, B.; Atay, G., ve Öztürk, E. (2011). Assessment of children with special health care needs with family centered approach. Türkiye Çocuk Hastalığı Dergisi, 5(2), 123-128
  • Boon, R. T., & Spencer, V. G. (2010). Best practices for the inclusive classroom: Scientifically based strategie for success. Waco; Prufrock Press.
  • Bronfenbrenner, U. (2000). Ecological systems theory. In A. Kazdin (Ed.), Encyclopaedia of Psychology, Washington, DC: American Psychological Association.
  • Brown, P. M., & Nott, P. (2005). Family centered practice in early intervention for oral language development: Philosophy, methods and results. P. E. Spencer (Ed.), Advances in the Spoken Language Development of Deaf and Hard of Hearing Children, (pp. 136-165). NC, USA: Oxford University Press.
  • Bustos, E.C. (2011). Parent experıences of a famıly-centered ınterventıon: examining ethnocultural group dıfferences, (Unpublished Doctorate thesis). University of Oregon, Eugene, Oregon
  • Büyüköztürk, Ş. (2008). Sosyal Bilimler İçin Veri Analizi El Kitabı. Ankara. Pegem Yayıncılık.
  • Caicedo, C. (2014). Families with special needs children: Family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398-407. DOI: 10.1177/1078390314561326 Camara, C. (2002). Parent education in family-centered practice with families of children with special needs: A partnership towards family empowerment. (Unpublished Master Thesis). University of Manitoba Winnipeg, Manitoba
  • Cavkaytar, A., & Diken İ. H. (2006). Özel eğitime giriş (2nd Ed.). Ankara. Kök Yayıncılık.
  • Childress, D. C. (2004). Special Instruction and Natural Environments: Best Practices in Early Intervention. Infants and Young Children, 17(2), 162-170.
  • Choi, E. K., Lee, Y. J., & Yoo, I. Y. (2011). Factors associated with emotional response of parents at the time of diagnosis of Down Syndrome. Journal for Specialists in Pediatric Nursing, 16, 113-120. DOI: 10.1111/j.1744-6155.2011.00276.x.
  • Cohen, L. & Manion, L. (1997). Research methods in education (4th ed.). Routledge.London
  • Cole, B. L. (2014). A Qualıtatıve Case Study of Five Mothers' Experiences with Early Intervention Services and Preschool Choices For Their Children With Disabilities, School of Graduate Studies and Research, (Unpublished Doctorate Thesis). Indiana University of Pennsylvania, Pennsylvania
  • Coogle, G., C. (2012) A Study Of Family Centered Help Giving Practices in Early Intervention, (Unpublished Doctorate Thesis) Florida State University, Tallahassee, Florida
  • Crais, E. R., Roy, V. P., & Free, K. (2006). Parents' and professionals' perceptions of the implementation of family-centered practices in child assessments. American Journal of Speech-Language Pathology, 15(4), 365-377. DOI: 10.1044/1058-0360(2006/034)
  • Çetinkaya, Z., ve Öz, F. (2000). Serebral palsili çocuğu olan olan annelerin bilgi gereksinimlerinin karşılanmasına planlı bilgi vermenin etkisi, C.Ü. Hemşirelik Yüksek Okulu Dergisi, 4, 40-51.
  • Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28(1), 42-52. DOI: 10.1177/0271121408316699
  • Denzin N. & Lincoln Y. (Eds.) (2000). Handbook of Qualitative Research. London: Sage Publication Inc.
  • DesJardin, J., L. (2006). Family empowerment: Supporting language development in young children who are deaf or hard of hearing. Volta Review, 106 (monograph), 275-298.
  • Dunst, C. J. (2002). Family-centered practices: Birth through high school. The Journal of Special Education, 36(3), 141–149. DOI: 10.1177/00224669020360030401
  • Dunst, C. J., Bruder, M. B., & Espe-Sherwindt, M. (2014). Family capacity-building in early childhood intervention: Does context and setting matter? School Community Journal, 24(1), 37-48.
  • Dunst, C. J., Hamby, D. W., & Brookfield, J. (2007). Modeling the effects of early childhood intervention variables on parent and family well being. Journal of Applied Quantitative Methods, 2(3), 268-288.
  • Dunst, C.J., & Espe-Sherwindt, M. (2016), Family Centered Practices in Early Childhood Intervention, (s. 37-57), Reichow, B., Boyd, B. A., Barton, A. A., Odom, S. L. (ed.) Handbook of Early Childhood Special Education, Sweden: Springer.
  • Dunst, C.J., Trivette, C.M., Davis, M., & Cornwell, J. (1988). Enabling and empowering families of children with health impairments. CHC. 17(2), 71-81.
  • Eldeniz Çetin, M. & Sönmez, M. (2018). Identification of the problems experienced by mothers with children with multiple disabilities. İlköğretim Online, 2018; 17(3): s.1252-1267.DOI: 10.17051/ilkonline.2018.466339
  • Elson, V., M., (2000), The social and economic impact on families of children with severe disabilities. (Unpublished Doctorate Thesis). The Union Institute, Cincinnati, Ohio
  • Epley, P. H., Summers, J. A., & Turnbull, A. (2011). Family outcomes of early intervention: Families’ perceptions of need, services, and outcomes. Journal of Early Intervention, 33(3), 201-219. DOI: 10.1177/1053815111425929
  • Espe-Sherwindt, M. (2008). Family-centered practice: Collaboration, competency and evidence. Support for Learning, 23(3), 136-143. DOI: 10.1111/j.14679604.2008.00384.x
  • Ghosh, S., & Parish, S. (2013). Prevalence and economic well-being of families raising multiple children with disabilities. Children and Youth Services Review, 35(9), 1431–1439.
  • Graungaard, A. H., & Skov, L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health and Development, 33(3), 296-307. DOI: 10.1111/j.13652214.2006.00666.x
  • Gregg, K., Rugg, M., & Souto-Manning, M. (2011). Fostering family-centered practices through a family-created portfolio. The School Community Journal, 71(1), 53-70.
  • Guralnick, M. J. (2011). Why Early Intervention works: A systems perspective. Infants & Young Children, 24(1), 6-28. DOI: 10.1097/IYC.0b013e3182002cfe
  • Hanson, M., & Espinosa, L. (2016). Culture, Ethnicity, and Linguistic Diversity: Implications for Early Childhood Special Education, (pp. 455-473), Reichow, B., Boyd, B. A., Barton, A. A., Odom, S. L. (Ed.) Handbook of Early Childhood Special Education, Sweden: Springer.
  • Hiebert-Murphy, D., Trute, B., & Wright, A. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144-158. DOI: 10.1080/10522158.2011.552404
  • Jansen, S. L., Putten, A. A. J., Post, W. J., & Vlaskamp, C. (2014). Family-centredness of professionals who support people with profound intellectual and multiple disabilities: Validation of the Dutch “Measure of Processes of Care for Service Providers” (MPOCSP PIMD). Research in Developmental Disabilities, 35(7), 1623–1630. DOI:10.1016/j.ridd.2014.03.044
  • Jansen, S.L.G., Putten, A. A. J., & Vlaskamp, C. (2012). What parents find important in the support of a child with profound intellectual and multiple disabilities. Child: Care, Health and Development, 39(3), 432-441. DOI: 10.1111/j.1365-2214.2012.01381.x
  • Kamenopoulou, L. (2012). A study on the ınclusion of deafblind young people in mainstream schools: Key findings and implications for research and practice. British Journal of Special Education, 39(3), 137-145 DOI: 10.1111/j.14678578.2012.00546.x
  • Karadağ, G. (2009). Hardships undergone by mothers with handicapped children, hopelessness and social support from family. TAF Preventive Medicine Bulletin, 8(4), 315-322.
  • Kesiktaş, A.D. (2012). Görme yetersizliği olan küçük çocuklarda anne-çocuk etkileşimini destekleyen müdahale örneği: Bir eylem araştırması (Yayınlanmamış Doktora Tezi). Eğitim Bilimleri Enstitüsü, Ankara Üniversitesi, Ankara.
  • Kizir, M., & Çifci Tekinarslan, İ. (2018). Determining the problems and the methods of coping with the problems of the mothers of children with severe disabilities. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 19(2), 233256. DOI: 10.21565/ozelegitimdergisi.321683
  • Mahoney, G. (2009). Relationship focus intervention (RFI): enhancing the role of parents in children's developmental intervention. International Journal of Early Childhood Special Education (int-jecse), 1(1), 79-94.
  • Mak, L., Hiebert-Murphy, D., Walker, J. R., & Altman, G. (2014). Parents’ decision making and their information needs concerning treatments for child anxiety: Implications for family-centered practice. Journal of Family Social Work, 17, 51–67. DOI: 10.1080/10522158.2013.809671
  • Mandak, K., O’Neill, T., Light, J., & Fosco, G.M. (2017). Bridging the gap from values to actions: a family systems framework for family-centered AAC services. Augmentative and Alternative Communication, 33,32-41. DOI: 10.1080/07434618.2016.1271453
  • Marian, M. (2011). Family-centered practices for families of latino heritage with young children with disabilities in rural areas, (Unpublished Doctorate Thesis) Faculty of the Fraduate School at the University of North Carolina at Greensboro
  • Mastropieri, A.M., & Scruggs, T.E. (2010). The inclusive classroom: Strategies for effective differentiated instruction. Upper Saddle River NJ: Pearson Education.
  • McCollum, J.A., & Hemmeter, M.L. (2000). Parent-child interaction intervention when children have disabilities. In. M.J. Guralnick (Ed.), The Effectiveness of early interveniton (s. 549-576). Baltimore: Paul H. Brookes Publishing Co.
  • Mednick, M. (2007). Supporting children with multiple disabilities. New York, Continum International Publishing Group.
  • Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2),83–87. DOI: https://doi.org/10.1111/j.1741-1130.2007.00104.x
  • Odom, S. L. (2016). The role of theory in early childhood special education and early intervention, Reichow, B., Boyd, B. A., Barton, E. E., & Odom, S. L. (Ed.). Handbook of early childhood special education. Sweden: Springer.
  • Pang, Y. (2010). Facilitating family involvement in early intervention to preschool transition. School Community Journal, 20(2), 183-198.
  • Park, J., & Turnbull, A. P. (2003). Service integration in early intervention: Determining interpersonal and structural factors for its success. Infants & Young Children, 16(1), 48-58.
  • Putten, A., Vlaskamp, C., Reynders K., & Nakken, H., (2005). Children with profound intellectual and multiple disabilities: the effects of functional movement activities; Clinical Rehabilitation, 19(6), 613-620. DOI: 10.1191/0269215505cr899oa
  • Richardson, L., F. (2018). Perspectives and experiences of parents of children with communication needs in early intervention, (Unpublished Doctorate Thesis), The College of Health and Human Development, The Pennsylvania State University The Graduate School, Pennsylvania
  • Sağıroğlu, N. (2006). Özel Gereksinimli Bireylere Sahip Ailelerin Çocuklarının Devam Ettiği Özel Eğitim ve Rehabilitasyon Merkezlerinden Beklentileri (Yayımlanmamış Yüksek Lisans Tezi). Eğitim Bilimleri Enstitüsü, Abant İzzet Baysal Üniversitesi, Bolu.
  • Sardohan Yıldırım A.E., & Akçamete, G. (2014), Determination of difficulties encountered by mothers having children with multiple disabilities during early childhood special education services process. Cumhuriyet International Journal of Education-CIJE, 3(1), 74-89.
  • Sardohan Yıldırım, A.E. (2017). Aile merkezli eğitim modeli ile çoklu yetersizliğe sahip çocuğu olan ailelerin güçlendirilmesi sürecinin incelenmesi, (Yayınlanmamış Doktora Tezi), Eğitim Bilimleri Enstitüsü, Ankara Üniversitesi, Ankara
  • Sardohan Yıldırım, A.E., & Espe-Sherwindt, M. (2015), Unpublished TUBİTAK Term Report
  • Sardohan Yıldırım, A.E., & Espe-Sherwindt, M. (2016), Unpublished TUBİTAK Final Report
  • Seliner, B., Latal, B., & Spirig, R., (2016), When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care. Journal for Specialists in Pediatric Nursing. 21(3), 147- 157. DOI: 10.1111/jspn.12150
  • Sterbova, D., & Kdlacek, M. (2014). Deaf-blindness: Voices of mothers concerning leisure time physical activity and coping with disability. Acta Gymnica, 44(4), 193-201. DOI: 10.5507/ag.2014.020 Sucuoğlu, B. (1995). Özürlü çocuğu olan anne/babaların gereksinimlerinin belirlenmesi. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 2(1), 10-18.
  • Summers, J. A., Hoffman, L., Marquis, J., Turnbull, A., & Poston, D. (2005). Relationship between parent satisfaction regarding partnerships with professionals and age of child. Topics in Early Childhood Special Education,25(1), 48-58.
  • Şafak, P. (2012). Ağır ve çoklu yetersizliği olan çocukların eğitimi. Ankara: Vize Yayıncılık.
  • Tekin-İftar, E. (2005). İleri derecede ve çoklu yetersizlikler. S. Eripek (Ed.), Özel Eğitim (81- 96). Eskişehir: Anadolu Üniversitesi Yayınları.
  • Trainor, A. (2010). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology and Education Quarterly, 41(3), 245–263. DOI: 10.1111/j.1548-1492.2010.01086.x
  • Trivette, C. M., Dunst, C., J., & Hamby, D.W. (2010), Influences of family-systems intervention practices on parent-child ınteractions and child development, Topics in Early Childhood Special Education, 30(1), 3-19 DOI: 10.1177/0271121410364250
  • Turan, Z. (2010), İşitme kayıplı çocuklarda doğal işitsel-sözel yaklaşımla sürdürülen bir aile eğitimi çalışmasının incelenmesi, Kuram ve Uygulamada Eğitim Bilimleri, 10 (3), 1697-1756
  • Turan, Z. (2015). Yetişkin eğitimi bakış açısıyla işitme kayıplı çocuğu olan ailelerle çalışmak. Abant İzzet Baysal Üniversitesi Eğitim Fakültesi Dergisi, 15(Özel Sayı), 9-16.
  • Turnbull, A. P., Summers, J. A., Turnbull, R., Brotherson, M. J., Winton, P., & Roberts, R. (2007). Family supports and services in early intervention: A bold vision. Journal of Early Intervention, 29(3), 187-206. DOI: 10.1177/105381510702900301
  • Wang, P., & Michaels, C. A. (2010). Chinese families of children with severe disabilities: Family needs and available support. Research and Practice for Persons with Severe Disabilities, 34(2), 21-32. DOI: 10.2511/rpsd.34.2.21
  • Wilder, J., & Granlund, M. (2015). Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 28(2), 133-144. DOI: 10.1111/jar.12111
  • Williams, M. E., Perrigo, J. L., Banda, T. Y., Matic, T., & Goldfarb, F. D. (2013). Barriers to Accessing Services for Young Children, Journal of Early Intervention, 35(1), 61–74. DOI: 10.1177/1053815113507111 Winton, P. (1986). Effective strategies for involving families in intervention efforts. Focus on Exceptional Children, 19(2), 1-12.
  • Yates, A. (2012), Supporting parents of young children with severe disabilities: An action research study, (Unpublishing Doctorate Thesis), Fielding Graduate University, Santa Barbara, CA
  • Yazıcı, A. (2009), Çok engelli çocukların annelerinin, çocuklarının gelişimlerine ilişkin görüşlerinin betimlenmesi, (Yayınlanmamış Yüksek Lisans Tezi) Marmara Üniversitesi, Eğitim Bilimleri Enstitüsü. İstanbul. Yıldırım, A., Şimşek, H. (2013). Sosyal Bilimlerde Nitel Araştırma Yöntemleri. Ankara, Seçkin Yayıncılık.
  • Zijlstra, H. P., & C. Vlaskamp. (2005). The impact of medical conditions on the support of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 151–161. DOI: 68-3148.2005.00244.x
Yıl 2019, Cilt: 11 Sayı: 2, 168 - 182, 20.12.2019
https://doi.org/10.20489/intjecse.670476

Öz

Kaynakça

  • Akçamete, G. (1992). Çoklu yetersizliği olan öğrenciler, Ankara Üniversitesi Eğitim Bilimleri Fakültesi Dergisi, 24 (1), 145-150.
  • Ayyıldız, E. (2007). Çok engelli çocuklarda erken müdahale, Özel Eğitim ve Rehabilitasyon Dergisi, 3(10), 50-52.
  • Bahçıvanoğlu-Yazıcı, A., & Akçin, N. (2014). Describing Mother's Opinions About Development Process of Their Children with Multiple Disability, Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi (KEFAD), 15(2), 335-356.
  • Bailey, D. B., Raspa, M., & Fox, L. C. (2012). What is the future of family outcomes and family centered services? Topics in Early Childhood Special Education, 31(4), 216 223. DOI: 10.1177/0271121411427077
  • Bailey, D. B., Raspa, M., Humphreys, B. P., & Sam, A. M. (2011). Promoting family outcomes in early intervention. In J. M. Kauffman ve Hallahan (Ed.). Handbook of special education (pp. 668-684). New York, NY: Routledge.
  • Berger, H. E. (2008). Parents as partners in education: families and school working together. New Jersey: Pearson Merrill Prentice Hall.
  • Bernstein, M. E., & Barta, L. (1988). What do parents want in parent education?. American Annals of the Deaf, 133(3), 235-246. DOI: 10.1353/aad.2012.0833
  • Berryhill, F., L., (2013). Family-centered practices ve positive behavior support: a qualitative examination of families’ perspectives of managing preschoolers’ challenging behaviors, (Unpublished Doctorate Thesis) Faculty of the Graduate School Tennessee Technological University, Tennessee
  • Best, J. S., Wolff-Heller, K., & Bigge, J. L. (2010). Teaching individuals with physcial or multiple disabilities (6th ed.). USA: Pearson.
  • Bingöler Pekcici, B.; Atay, G., ve Öztürk, E. (2011). Assessment of children with special health care needs with family centered approach. Türkiye Çocuk Hastalığı Dergisi, 5(2), 123-128
  • Boon, R. T., & Spencer, V. G. (2010). Best practices for the inclusive classroom: Scientifically based strategie for success. Waco; Prufrock Press.
  • Bronfenbrenner, U. (2000). Ecological systems theory. In A. Kazdin (Ed.), Encyclopaedia of Psychology, Washington, DC: American Psychological Association.
  • Brown, P. M., & Nott, P. (2005). Family centered practice in early intervention for oral language development: Philosophy, methods and results. P. E. Spencer (Ed.), Advances in the Spoken Language Development of Deaf and Hard of Hearing Children, (pp. 136-165). NC, USA: Oxford University Press.
  • Bustos, E.C. (2011). Parent experıences of a famıly-centered ınterventıon: examining ethnocultural group dıfferences, (Unpublished Doctorate thesis). University of Oregon, Eugene, Oregon
  • Büyüköztürk, Ş. (2008). Sosyal Bilimler İçin Veri Analizi El Kitabı. Ankara. Pegem Yayıncılık.
  • Caicedo, C. (2014). Families with special needs children: Family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398-407. DOI: 10.1177/1078390314561326 Camara, C. (2002). Parent education in family-centered practice with families of children with special needs: A partnership towards family empowerment. (Unpublished Master Thesis). University of Manitoba Winnipeg, Manitoba
  • Cavkaytar, A., & Diken İ. H. (2006). Özel eğitime giriş (2nd Ed.). Ankara. Kök Yayıncılık.
  • Childress, D. C. (2004). Special Instruction and Natural Environments: Best Practices in Early Intervention. Infants and Young Children, 17(2), 162-170.
  • Choi, E. K., Lee, Y. J., & Yoo, I. Y. (2011). Factors associated with emotional response of parents at the time of diagnosis of Down Syndrome. Journal for Specialists in Pediatric Nursing, 16, 113-120. DOI: 10.1111/j.1744-6155.2011.00276.x.
  • Cohen, L. & Manion, L. (1997). Research methods in education (4th ed.). Routledge.London
  • Cole, B. L. (2014). A Qualıtatıve Case Study of Five Mothers' Experiences with Early Intervention Services and Preschool Choices For Their Children With Disabilities, School of Graduate Studies and Research, (Unpublished Doctorate Thesis). Indiana University of Pennsylvania, Pennsylvania
  • Coogle, G., C. (2012) A Study Of Family Centered Help Giving Practices in Early Intervention, (Unpublished Doctorate Thesis) Florida State University, Tallahassee, Florida
  • Crais, E. R., Roy, V. P., & Free, K. (2006). Parents' and professionals' perceptions of the implementation of family-centered practices in child assessments. American Journal of Speech-Language Pathology, 15(4), 365-377. DOI: 10.1044/1058-0360(2006/034)
  • Çetinkaya, Z., ve Öz, F. (2000). Serebral palsili çocuğu olan olan annelerin bilgi gereksinimlerinin karşılanmasına planlı bilgi vermenin etkisi, C.Ü. Hemşirelik Yüksek Okulu Dergisi, 4, 40-51.
  • Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28(1), 42-52. DOI: 10.1177/0271121408316699
  • Denzin N. & Lincoln Y. (Eds.) (2000). Handbook of Qualitative Research. London: Sage Publication Inc.
  • DesJardin, J., L. (2006). Family empowerment: Supporting language development in young children who are deaf or hard of hearing. Volta Review, 106 (monograph), 275-298.
  • Dunst, C. J. (2002). Family-centered practices: Birth through high school. The Journal of Special Education, 36(3), 141–149. DOI: 10.1177/00224669020360030401
  • Dunst, C. J., Bruder, M. B., & Espe-Sherwindt, M. (2014). Family capacity-building in early childhood intervention: Does context and setting matter? School Community Journal, 24(1), 37-48.
  • Dunst, C. J., Hamby, D. W., & Brookfield, J. (2007). Modeling the effects of early childhood intervention variables on parent and family well being. Journal of Applied Quantitative Methods, 2(3), 268-288.
  • Dunst, C.J., & Espe-Sherwindt, M. (2016), Family Centered Practices in Early Childhood Intervention, (s. 37-57), Reichow, B., Boyd, B. A., Barton, A. A., Odom, S. L. (ed.) Handbook of Early Childhood Special Education, Sweden: Springer.
  • Dunst, C.J., Trivette, C.M., Davis, M., & Cornwell, J. (1988). Enabling and empowering families of children with health impairments. CHC. 17(2), 71-81.
  • Eldeniz Çetin, M. & Sönmez, M. (2018). Identification of the problems experienced by mothers with children with multiple disabilities. İlköğretim Online, 2018; 17(3): s.1252-1267.DOI: 10.17051/ilkonline.2018.466339
  • Elson, V., M., (2000), The social and economic impact on families of children with severe disabilities. (Unpublished Doctorate Thesis). The Union Institute, Cincinnati, Ohio
  • Epley, P. H., Summers, J. A., & Turnbull, A. (2011). Family outcomes of early intervention: Families’ perceptions of need, services, and outcomes. Journal of Early Intervention, 33(3), 201-219. DOI: 10.1177/1053815111425929
  • Espe-Sherwindt, M. (2008). Family-centered practice: Collaboration, competency and evidence. Support for Learning, 23(3), 136-143. DOI: 10.1111/j.14679604.2008.00384.x
  • Ghosh, S., & Parish, S. (2013). Prevalence and economic well-being of families raising multiple children with disabilities. Children and Youth Services Review, 35(9), 1431–1439.
  • Graungaard, A. H., & Skov, L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health and Development, 33(3), 296-307. DOI: 10.1111/j.13652214.2006.00666.x
  • Gregg, K., Rugg, M., & Souto-Manning, M. (2011). Fostering family-centered practices through a family-created portfolio. The School Community Journal, 71(1), 53-70.
  • Guralnick, M. J. (2011). Why Early Intervention works: A systems perspective. Infants & Young Children, 24(1), 6-28. DOI: 10.1097/IYC.0b013e3182002cfe
  • Hanson, M., & Espinosa, L. (2016). Culture, Ethnicity, and Linguistic Diversity: Implications for Early Childhood Special Education, (pp. 455-473), Reichow, B., Boyd, B. A., Barton, A. A., Odom, S. L. (Ed.) Handbook of Early Childhood Special Education, Sweden: Springer.
  • Hiebert-Murphy, D., Trute, B., & Wright, A. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144-158. DOI: 10.1080/10522158.2011.552404
  • Jansen, S. L., Putten, A. A. J., Post, W. J., & Vlaskamp, C. (2014). Family-centredness of professionals who support people with profound intellectual and multiple disabilities: Validation of the Dutch “Measure of Processes of Care for Service Providers” (MPOCSP PIMD). Research in Developmental Disabilities, 35(7), 1623–1630. DOI:10.1016/j.ridd.2014.03.044
  • Jansen, S.L.G., Putten, A. A. J., & Vlaskamp, C. (2012). What parents find important in the support of a child with profound intellectual and multiple disabilities. Child: Care, Health and Development, 39(3), 432-441. DOI: 10.1111/j.1365-2214.2012.01381.x
  • Kamenopoulou, L. (2012). A study on the ınclusion of deafblind young people in mainstream schools: Key findings and implications for research and practice. British Journal of Special Education, 39(3), 137-145 DOI: 10.1111/j.14678578.2012.00546.x
  • Karadağ, G. (2009). Hardships undergone by mothers with handicapped children, hopelessness and social support from family. TAF Preventive Medicine Bulletin, 8(4), 315-322.
  • Kesiktaş, A.D. (2012). Görme yetersizliği olan küçük çocuklarda anne-çocuk etkileşimini destekleyen müdahale örneği: Bir eylem araştırması (Yayınlanmamış Doktora Tezi). Eğitim Bilimleri Enstitüsü, Ankara Üniversitesi, Ankara.
  • Kizir, M., & Çifci Tekinarslan, İ. (2018). Determining the problems and the methods of coping with the problems of the mothers of children with severe disabilities. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 19(2), 233256. DOI: 10.21565/ozelegitimdergisi.321683
  • Mahoney, G. (2009). Relationship focus intervention (RFI): enhancing the role of parents in children's developmental intervention. International Journal of Early Childhood Special Education (int-jecse), 1(1), 79-94.
  • Mak, L., Hiebert-Murphy, D., Walker, J. R., & Altman, G. (2014). Parents’ decision making and their information needs concerning treatments for child anxiety: Implications for family-centered practice. Journal of Family Social Work, 17, 51–67. DOI: 10.1080/10522158.2013.809671
  • Mandak, K., O’Neill, T., Light, J., & Fosco, G.M. (2017). Bridging the gap from values to actions: a family systems framework for family-centered AAC services. Augmentative and Alternative Communication, 33,32-41. DOI: 10.1080/07434618.2016.1271453
  • Marian, M. (2011). Family-centered practices for families of latino heritage with young children with disabilities in rural areas, (Unpublished Doctorate Thesis) Faculty of the Fraduate School at the University of North Carolina at Greensboro
  • Mastropieri, A.M., & Scruggs, T.E. (2010). The inclusive classroom: Strategies for effective differentiated instruction. Upper Saddle River NJ: Pearson Education.
  • McCollum, J.A., & Hemmeter, M.L. (2000). Parent-child interaction intervention when children have disabilities. In. M.J. Guralnick (Ed.), The Effectiveness of early interveniton (s. 549-576). Baltimore: Paul H. Brookes Publishing Co.
  • Mednick, M. (2007). Supporting children with multiple disabilities. New York, Continum International Publishing Group.
  • Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2),83–87. DOI: https://doi.org/10.1111/j.1741-1130.2007.00104.x
  • Odom, S. L. (2016). The role of theory in early childhood special education and early intervention, Reichow, B., Boyd, B. A., Barton, E. E., & Odom, S. L. (Ed.). Handbook of early childhood special education. Sweden: Springer.
  • Pang, Y. (2010). Facilitating family involvement in early intervention to preschool transition. School Community Journal, 20(2), 183-198.
  • Park, J., & Turnbull, A. P. (2003). Service integration in early intervention: Determining interpersonal and structural factors for its success. Infants & Young Children, 16(1), 48-58.
  • Putten, A., Vlaskamp, C., Reynders K., & Nakken, H., (2005). Children with profound intellectual and multiple disabilities: the effects of functional movement activities; Clinical Rehabilitation, 19(6), 613-620. DOI: 10.1191/0269215505cr899oa
  • Richardson, L., F. (2018). Perspectives and experiences of parents of children with communication needs in early intervention, (Unpublished Doctorate Thesis), The College of Health and Human Development, The Pennsylvania State University The Graduate School, Pennsylvania
  • Sağıroğlu, N. (2006). Özel Gereksinimli Bireylere Sahip Ailelerin Çocuklarının Devam Ettiği Özel Eğitim ve Rehabilitasyon Merkezlerinden Beklentileri (Yayımlanmamış Yüksek Lisans Tezi). Eğitim Bilimleri Enstitüsü, Abant İzzet Baysal Üniversitesi, Bolu.
  • Sardohan Yıldırım A.E., & Akçamete, G. (2014), Determination of difficulties encountered by mothers having children with multiple disabilities during early childhood special education services process. Cumhuriyet International Journal of Education-CIJE, 3(1), 74-89.
  • Sardohan Yıldırım, A.E. (2017). Aile merkezli eğitim modeli ile çoklu yetersizliğe sahip çocuğu olan ailelerin güçlendirilmesi sürecinin incelenmesi, (Yayınlanmamış Doktora Tezi), Eğitim Bilimleri Enstitüsü, Ankara Üniversitesi, Ankara
  • Sardohan Yıldırım, A.E., & Espe-Sherwindt, M. (2015), Unpublished TUBİTAK Term Report
  • Sardohan Yıldırım, A.E., & Espe-Sherwindt, M. (2016), Unpublished TUBİTAK Final Report
  • Seliner, B., Latal, B., & Spirig, R., (2016), When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care. Journal for Specialists in Pediatric Nursing. 21(3), 147- 157. DOI: 10.1111/jspn.12150
  • Sterbova, D., & Kdlacek, M. (2014). Deaf-blindness: Voices of mothers concerning leisure time physical activity and coping with disability. Acta Gymnica, 44(4), 193-201. DOI: 10.5507/ag.2014.020 Sucuoğlu, B. (1995). Özürlü çocuğu olan anne/babaların gereksinimlerinin belirlenmesi. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 2(1), 10-18.
  • Summers, J. A., Hoffman, L., Marquis, J., Turnbull, A., & Poston, D. (2005). Relationship between parent satisfaction regarding partnerships with professionals and age of child. Topics in Early Childhood Special Education,25(1), 48-58.
  • Şafak, P. (2012). Ağır ve çoklu yetersizliği olan çocukların eğitimi. Ankara: Vize Yayıncılık.
  • Tekin-İftar, E. (2005). İleri derecede ve çoklu yetersizlikler. S. Eripek (Ed.), Özel Eğitim (81- 96). Eskişehir: Anadolu Üniversitesi Yayınları.
  • Trainor, A. (2010). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology and Education Quarterly, 41(3), 245–263. DOI: 10.1111/j.1548-1492.2010.01086.x
  • Trivette, C. M., Dunst, C., J., & Hamby, D.W. (2010), Influences of family-systems intervention practices on parent-child ınteractions and child development, Topics in Early Childhood Special Education, 30(1), 3-19 DOI: 10.1177/0271121410364250
  • Turan, Z. (2010), İşitme kayıplı çocuklarda doğal işitsel-sözel yaklaşımla sürdürülen bir aile eğitimi çalışmasının incelenmesi, Kuram ve Uygulamada Eğitim Bilimleri, 10 (3), 1697-1756
  • Turan, Z. (2015). Yetişkin eğitimi bakış açısıyla işitme kayıplı çocuğu olan ailelerle çalışmak. Abant İzzet Baysal Üniversitesi Eğitim Fakültesi Dergisi, 15(Özel Sayı), 9-16.
  • Turnbull, A. P., Summers, J. A., Turnbull, R., Brotherson, M. J., Winton, P., & Roberts, R. (2007). Family supports and services in early intervention: A bold vision. Journal of Early Intervention, 29(3), 187-206. DOI: 10.1177/105381510702900301
  • Wang, P., & Michaels, C. A. (2010). Chinese families of children with severe disabilities: Family needs and available support. Research and Practice for Persons with Severe Disabilities, 34(2), 21-32. DOI: 10.2511/rpsd.34.2.21
  • Wilder, J., & Granlund, M. (2015). Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 28(2), 133-144. DOI: 10.1111/jar.12111
  • Williams, M. E., Perrigo, J. L., Banda, T. Y., Matic, T., & Goldfarb, F. D. (2013). Barriers to Accessing Services for Young Children, Journal of Early Intervention, 35(1), 61–74. DOI: 10.1177/1053815113507111 Winton, P. (1986). Effective strategies for involving families in intervention efforts. Focus on Exceptional Children, 19(2), 1-12.
  • Yates, A. (2012), Supporting parents of young children with severe disabilities: An action research study, (Unpublishing Doctorate Thesis), Fielding Graduate University, Santa Barbara, CA
  • Yazıcı, A. (2009), Çok engelli çocukların annelerinin, çocuklarının gelişimlerine ilişkin görüşlerinin betimlenmesi, (Yayınlanmamış Yüksek Lisans Tezi) Marmara Üniversitesi, Eğitim Bilimleri Enstitüsü. İstanbul. Yıldırım, A., Şimşek, H. (2013). Sosyal Bilimlerde Nitel Araştırma Yöntemleri. Ankara, Seçkin Yayıncılık.
  • Zijlstra, H. P., & C. Vlaskamp. (2005). The impact of medical conditions on the support of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 151–161. DOI: 68-3148.2005.00244.x
Toplam 82 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Bölüm Makaleler
Yazarlar

A. Emel Sardohan Yıldırım Bu kişi benim 0000-0002-2393-299X

A. Gönül Akçamete Bu kişi benim 0000-0002-2964-514X

Yayımlanma Tarihi 20 Aralık 2019
Yayımlandığı Sayı Yıl 2019 Cilt: 11 Sayı: 2

Kaynak Göster

APA Sardohan Yıldırım, A. E., & Akçamete, A. G. (2019). A family centered training model proposal to meet the needs of parents having multiple disabled child. International Journal of Early Childhood Special Education, 11(2), 168-182. https://doi.org/10.20489/intjecse.670476