A family centered training model proposal to meet the needs of parents having multiple disabled child
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 information 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.
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 University Journal of Kırşehir Education Faculty, 15(2), 335-356.
Bailey, D. B., Raspa, M., & Fox, L. C. (2012). What is the future of family outcomes and family centered servi-ces? 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 strategies 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: Philo-sophy, 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 experiences of a family-centered intervention: examining ethnocultural group differences, (Unpublished Doctorate thesis). Uni-versity of Oregon, Eugene, Oregon
Büyüköztürk, Ş. (2008). Sosyal Bilimler İçin Veri Analizi El Kitabı. [Manual of data analysis for social sciences], Ankara. Pegem Publishing.
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 partner-ship towards family empowerment. (Unpublished Master Thesis). University of Manitoba Winnipeg, Manitoba
Cavkaytar, A., & Diken İ. H. (2006). Özel eğitime giriş [Introduction of Special Education]. (2nd Ed.). Ankara. Kök Publishing.
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.). Rout-ledge.London
Cole, B. L. (2014). A Qualitatıve 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 Doc-torate 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., & Öz, F. (2000). The effect of providing planned information over the fulfillment of information needs of mothershaving children with cerebral palcy, Journal of Cumhuriyet University School of Nursing, 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). Hand-book of Qualitative Research. London: Sage Publication Inc.
DesJardin, J., L. (2006). Family empower-ment: 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 em-powering 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. Elementary Education Online, 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 Re-view, 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 intellec-tual 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., & Vlas-kamp, C. (2012). What parents find important in the support of a child with profound intellectual and multiple di-sabilities. 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 inclusion of deaf-blind 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). A parent-child interaction intervention for small children with visual impairments: An action re-search (Unpublished Doctorate The-sis). Institute of Education Sciences, Ankara University, 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 University Faculty of Educational Sciences Journal of Special Education, 19(2), 233-256. 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. Up-per 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 intervention (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: Deter-mining 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 pro-found 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 interven-tion, (Unpublished Doctorate Thesis), The College of Health and Human Development, The Pennsylvania State University The Graduate School, Pennsylvania
Sağıroğlu, N. (2006). Expectations of the families (parents) with special needed individuals from the special education and rehabilitation center (Unpublished Master Thesis). Institute of Education Sciences, Abant İzzet Baysal University, Bolu.
Sardohan Yıldırım A.E., & Akçamete, G. (2014), Determination of difficulties encountered by mothers having child-ren with multiple disabilities during early childhood special education ser-vices process. Cumhuriyet International Journal of Education-CIJE, 3(1), 74-89.
Sardohan Yıldırım, A.E. (2017). Examining the process of strengthening families of children with multiple disability via family centered education model, (Unpublished Doctorate Thesis). Institute of Education Sciences, Ankara University, 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. [Education of Children with Severe and Multiple Disabilites] Ankara: Vize Publishing.
Tekin-İftar, E. (2005). İleri derecede ve çoklu yetersizlikler. [Severe and Multiple Dis-abilities], in S. Eripek (Ed.),Özel Eğitim [Special Education] (81- 96). Eskişehir: Anadolu University Publishing.
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 interactions and child development, Topics in Early Childhood Special Education, 30(1), 3-19 DOI: 10.1177/0271121410364250
Turan, Z. (2010). An early natural auditory-oral intervention approach for children with hearing loss: A qualitative study. Educational Sciences: Theory & Practice, 10(3), 1697-1756.
Turan, Z. (2015). Working with parents who have children with hearing loss: Adult education perspective, Bolu Abant İzzet Baysal University, Journal of Faculty of Education, 15(Special Issue), 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 Disabi-lities, 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, (Unpublished Doctorate Thesis), Fielding Graduate University, Santa Barbara, CA
Yıldırım, A., Şimşek, H. (2013). Sosyal Bilimlerde Nitel Araştırma Yöntemleri. [Qualitative research methods in the social sciences] Ankara, Seçkin Publishing.
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
Copyright (c) 2019 International Journal of Early Childhood Special Education
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
I accept that the Owner of International Journal of Early Childhood Special Education, the Editor, Associate Editors, Reviewers and the Editorial Board cannot be hold responsible regarding the scope, the findings, the discussion and conclusion of the manuscript submitted.
I declare to the editorship of International Journal of Early Childhood Special Education that the manuscript is original and has not been published anywhere else or is not under evaluation process for any other journal.
I approve that I grant International Journal of Early Childhood Special Education as the sole and exclusive right and license to publish for the full legal term of copyright of my manuscript concurring with article 5846 / 22-23-25 while I retain copyright in the work.