Determining The Views and Needs Of Mothers Having A Baby With A Developmental Disability Over The Process They Experience After Diagnosis

Özlem Gözün Kahraman; Asya Çetin

doi:10.20489/intjecse.34518

Araştırma Makalesi

Determining The Views and Needs Of Mothers Having A Baby With A Developmental Disability Over The Process They Experience After Diagnosis

Yıl 2015, , 97 - 128, 15.07.2015

Özlem Gözün Kahraman , Asya Çetin

https://doi.org/10.20489/intjecse.34518

Öz

Earliness principle is essential in special education. Particularly the first three years is of critical importance in the developmental process. Called as the babyhood and early childhood, this period is regarded as a period which has the biggest openness to learning and where all developmental fields have their bases. Early intervention services to be given to babies having a developmental disability in this significant developmental period will provide the baby with realizing the potential the baby has at the highest level and offer very importance services to support their development. The services to be given in this period are planned by paying attention to both the baby and the family. It is necessary for the parents to determine their interaction with the children, family structure, their emotional status, sources and needs in order to provide the participation children of parents being affected by incapability into education and increase it. In order to determine the needs of parents, it is required that the problems experienced by them should be determined from the time when the family learn they have a child being affected by incapability onwards. The researches carried out to determine the needs of parents show that parents have information needs, supportive needs, being able to explain the status of the child, social services, economic needs, needs with regard to the running of the family and the needs regarding the education of the child (Varol, 2006).

The purpose of the study was to determine the views of mothers of the babies with a developmental disability over the process they experience and their needs. The working group was comprised of 8 mothers of children with a developmental disability in 0-2 age group. The data of the study was gathered through semi-structured interview technique, one of the data collection methods. The mothers were asked 9 open-ended questions and the sub-questions of them and the responses were recorded with a recording device. The interviews took 30-45 minutes. The analysis of data gathered through interviews were made through descriptive analysis technique. The findings were analyzed paying attention to the literature and other researches.

Anahtar Kelimeler

Developmental disability; babies; needs

Kaynakça

Akkök, F. (2003). Farklı özelliğe sahip olan çocuk aileleri ve ailelerle yapılan çalışmalar. Ayşegül Ataman (Ed.), Özel Eğitime Giriş. Ankara: Gündüz Eğitim Y ayıncılık.
Akoğlu, G. (2011). Ailelerle İlişki Temelli Ekip Oluşturma. Gönül Akçamete (Çev.Ed.), Özel Gereksinimi Olan Küçük Çocuklar (s.51-102) . Ankara: Nobel Akademik Y ayıncılık.
Bailey, D.B., & Simeonsson R.J (1988). Assessing needs of families handicapped infants. The Journal of Special Education, 22(1), 117-127.
Bailey, D. B.,& Powell, T. (2005). Assessing the information needs of families in early intervention. Michael Guralnick (Ed.), The developmental systems approach to early intervention (151-183). Baltimore: Paul H Brookes Publishing Company.
Bailey, D. B.,Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P., &Skinner, M. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. AmericanJournal on MentalRetardation, 104(5), 437-451.
Barnhart, L. L.,Fitzpatrick, V. D., Sidell, N. L., Adams, M. J., Shields, G. S., &Gomez, S. J. (1994). Perception of familyneed in pediatriconcology. Child and Adolescent Social Work Journal, 11, 137-148.
Blackman J. A. (2002) Earlyintervention: A global perspective. Infants and Young Children.15 (2), 11–19.
Büyüköztürk, Ş., Kılıç-Çakmak, E., Akgün, Ö.E., Karadeniz, Ş. ve Demirel, F. (2010). Bilimsel araştırma yöntemleri. Ankara: Pegem yayıncılık.
Castle, J. L. (1998). Parental feelings and grief experience: Having a child diagnosed with autism or other pervasive developmental disorder. Master’s Thesis, California State University.
Cavkaytar, A., Batu, S., & Çetin, O. B. (2008). Perspectives of Turkish Mothers on Having a Child with Developmental Disabilities. International Journal of Special Education, 23(2), 101-109.
Cooper, C. S.,& Allred, K. W. (1992). A comparison of mothers’ versus fathers’ needs for support in caring for a young child with special needs. Infant-Toddler Intervention, 2, 205-221.
Cunningham, C. (1985). Training and education approaches for parents of children with special needs. British Journal of Medical Psychology, 58, 285-305.
Cameron, S. J. and Armstrong, S., M. (1991). Stress, Coping, andResources in Mothers of Adults with Developmental Disabilities. Counselling Psychology Quarterly, 4(4), 301-310.
Coşkun, Y., Akkaş, G. (2009). Engelli Çocuğu Olan Annelerin Sürekli Kaygı Düzeyleri İle Sosyal Destek Algıları Arasındaki İlişki. Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi (KEFAD) 10 (1), 213-227.
Çetinkaya, Z. ve Öz, F. (2000). Serbral Palsili Çocuğu Olan Annelerin Bilgi Gereksinimlerinin Karşılanmasına Planlı Bilgi Vermenin Etkisi. C.Ü.Hemşirelik Yüksekokulu Dergisi. 4 (2).
Duygun, T., & 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.
Eker, D., Arkar, H., & Yaldız, H. (2001). Çok boyutlu algılanan sosyal destek ölçeğinin gözden geçirilmiş formunun faktör yapısı, geçerlik ve güvenirliği. Türk Psikiyatri Dergisi, 12(1),17-25.
Ertem, Ö. İ. (2005). İlk Üç Yaşta Gelişimsel Sorunları Olan Çocuklar: Üç Sorun ve Üç Çözüm. Özel eğitim Dergisi, 6 (2), 13-25.
Farmer, J. E.,Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J. (2004). Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29(5), 355-367.
Fortier, L. M.,Wanlass R. L.(1984 ). Family crisis following thediagnosis of a handicapped child. Family Relations, 33, 13-24.
Guralnick, M. J. (Ed.) (2005). The developmental systems approach to early intervention. Baltimore: Paul H. Brookes Publishing Company.
Hız Kurul, S.(2007). Nörolojik Gelişme Geriliği Riski Olan Süt Çocuklarının Erken Belirlenmesinin Önemi ve Klinisyenin Rolü. Dokuz Eylül Üniversitesi Tıp Fakültesi Dergisi, 21(3), 195-205.
Hebbeler, K., Spiker, D., Bailey, D., Scarborough, A., Malik, S., &Simeonsson, R.,et al. (2007). Early intervention for infants and toddlers with disabilities and their families: Participants, services, andoutcomes (Final Report of the National Early Intervention Longitudinal Study (NEILS). Menlo Park, CA: SRI International.
Hogan, N. S., Greenfield, D. B., & Schmidt, L. A. (2001). Development and validation of the Hogan Grief Reaction Checklist. Death Studies, 25, 1-32.
Horacek, H.J.,Ramey, C.T. Campbell, F.A., Hoffmann, K.P. &Fletcher, R.H. (1987). Predicting school failure and assessing early interventions withhigh-risk children. Journal of the American Academy of Child Psychiatry, 26, 758-763
Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus On Autism and Other Developmental Disabilities, 20(3), 180–189.
Knoche, L. L.,Sheridan, S. M., Clarke, B. L,Cline, D (2012).Getting Ready: Results of a Randomized Trial Of a Relationship Focused Internention on the Parent–Infant Relatonship in Rural Early Head Start. Infant Mental Health Journal, 33(5): 439–458
Meşe, İ. (2013). Engellenmiş Annelik: Zihinsel Engelli Çocukların Anneleri.
International Periodical for the Languages, Literature and History of Turkish or Turkic. 8 (12).
Özbek, A. ve Miral, S. (2003). Çocuk Ruh Sağlığı Açısından Prematürite. Çocuk Sağlığı ve Hastalıkları Dergisi, 46, 317-327.
Özmert, E. N. (2006). Erken çocukluk gelişiminin desteklenmesi-III. Aile. Çocuk Sağlığı ve Hastalıkları Dergisi, 49(3), 256-273.
Sucuoğlu, B., (1995). Özürlü Çocuğu Olan Anne-Babaların Gereksinimlerinin Belirlenmesi. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 2 (1), 10-18
Sucuoğlu, B.,&Aksaz, N. (1992). Otistik Çocuklara Bağımsız Yaşam Becerilerinin Kazandırılması. Psikoloji Dergisi, 27(7), 1526.
Sweet,M. A.,& Appelbaum M. I. (2004).Is Home Visiting an Effective Strategy? A Meta-Analytic Review of Home Visiting Programs for Families With Young Children. Child Development, 75(5) , 1435–1456
Sola C. ve Diken İ. (2008). Gelişimsel Gerilik Riski Altındaki Prematüre ve Düşük Doğum Ağırlıklı Çocuğa Sahip Annelerin Gereksinimlerinin Belirlenmesi. Özel Eğitim Dergisi. 9 (2), 21-36
Shonkoff, J. P. (2003). From neurons to neighborhoods: Old and new challenges for developmental and behavioral pediatrics. Journal of Developmental Behavioral Pediatr, 24(1), 70-6.
Tomasello N. M.,Mannıng A. R.,& Dulmus C. N. (2010). Family-Centered Early Intervention for Infants and Toddlers With Disabilities. Journal of Family Social Work, 13, 163-172.
Şimşek, H., Yıldırım, A. (2003). Sosyal bilimlerde nitel araştırma yöntemleri. Ankara: Seçkin Yayıncılık.
Walker, T. & Johnson, D.L. (1988). A follow-upevaluation of the Houston Prent-Child Development Center: Intelligence test results. Journal of Genetic Psychology, 149(3), 377-381.

Yıl 2015, , 97 - 128, 15.07.2015

Özlem Gözün Kahraman , Asya Çetin

https://doi.org/10.20489/intjecse.34518

Öz

Kaynakça

Akkök, F. (2003). Farklı özelliğe sahip olan çocuk aileleri ve ailelerle yapılan çalışmalar. Ayşegül Ataman (Ed.), Özel Eğitime Giriş. Ankara: Gündüz Eğitim Y ayıncılık.
Akoğlu, G. (2011). Ailelerle İlişki Temelli Ekip Oluşturma. Gönül Akçamete (Çev.Ed.), Özel Gereksinimi Olan Küçük Çocuklar (s.51-102) . Ankara: Nobel Akademik Y ayıncılık.
Bailey, D.B., & Simeonsson R.J (1988). Assessing needs of families handicapped infants. The Journal of Special Education, 22(1), 117-127.
Bailey, D. B.,& Powell, T. (2005). Assessing the information needs of families in early intervention. Michael Guralnick (Ed.), The developmental systems approach to early intervention (151-183). Baltimore: Paul H Brookes Publishing Company.
Bailey, D. B.,Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P., &Skinner, M. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. AmericanJournal on MentalRetardation, 104(5), 437-451.
Barnhart, L. L.,Fitzpatrick, V. D., Sidell, N. L., Adams, M. J., Shields, G. S., &Gomez, S. J. (1994). Perception of familyneed in pediatriconcology. Child and Adolescent Social Work Journal, 11, 137-148.
Blackman J. A. (2002) Earlyintervention: A global perspective. Infants and Young Children.15 (2), 11–19.
Büyüköztürk, Ş., Kılıç-Çakmak, E., Akgün, Ö.E., Karadeniz, Ş. ve Demirel, F. (2010). Bilimsel araştırma yöntemleri. Ankara: Pegem yayıncılık.
Castle, J. L. (1998). Parental feelings and grief experience: Having a child diagnosed with autism or other pervasive developmental disorder. Master’s Thesis, California State University.
Cavkaytar, A., Batu, S., & Çetin, O. B. (2008). Perspectives of Turkish Mothers on Having a Child with Developmental Disabilities. International Journal of Special Education, 23(2), 101-109.
Cooper, C. S.,& Allred, K. W. (1992). A comparison of mothers’ versus fathers’ needs for support in caring for a young child with special needs. Infant-Toddler Intervention, 2, 205-221.
Cunningham, C. (1985). Training and education approaches for parents of children with special needs. British Journal of Medical Psychology, 58, 285-305.
Cameron, S. J. and Armstrong, S., M. (1991). Stress, Coping, andResources in Mothers of Adults with Developmental Disabilities. Counselling Psychology Quarterly, 4(4), 301-310.
Coşkun, Y., Akkaş, G. (2009). Engelli Çocuğu Olan Annelerin Sürekli Kaygı Düzeyleri İle Sosyal Destek Algıları Arasındaki İlişki. Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi (KEFAD) 10 (1), 213-227.
Çetinkaya, Z. ve Öz, F. (2000). Serbral Palsili Çocuğu Olan Annelerin Bilgi Gereksinimlerinin Karşılanmasına Planlı Bilgi Vermenin Etkisi. C.Ü.Hemşirelik Yüksekokulu Dergisi. 4 (2).
Duygun, T., & 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.
Eker, D., Arkar, H., & Yaldız, H. (2001). Çok boyutlu algılanan sosyal destek ölçeğinin gözden geçirilmiş formunun faktör yapısı, geçerlik ve güvenirliği. Türk Psikiyatri Dergisi, 12(1),17-25.
Ertem, Ö. İ. (2005). İlk Üç Yaşta Gelişimsel Sorunları Olan Çocuklar: Üç Sorun ve Üç Çözüm. Özel eğitim Dergisi, 6 (2), 13-25.
Farmer, J. E.,Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J. (2004). Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29(5), 355-367.
Fortier, L. M.,Wanlass R. L.(1984 ). Family crisis following thediagnosis of a handicapped child. Family Relations, 33, 13-24.
Guralnick, M. J. (Ed.) (2005). The developmental systems approach to early intervention. Baltimore: Paul H. Brookes Publishing Company.
Hız Kurul, S.(2007). Nörolojik Gelişme Geriliği Riski Olan Süt Çocuklarının Erken Belirlenmesinin Önemi ve Klinisyenin Rolü. Dokuz Eylül Üniversitesi Tıp Fakültesi Dergisi, 21(3), 195-205.
Hebbeler, K., Spiker, D., Bailey, D., Scarborough, A., Malik, S., &Simeonsson, R.,et al. (2007). Early intervention for infants and toddlers with disabilities and their families: Participants, services, andoutcomes (Final Report of the National Early Intervention Longitudinal Study (NEILS). Menlo Park, CA: SRI International.
Hogan, N. S., Greenfield, D. B., & Schmidt, L. A. (2001). Development and validation of the Hogan Grief Reaction Checklist. Death Studies, 25, 1-32.
Horacek, H.J.,Ramey, C.T. Campbell, F.A., Hoffmann, K.P. &Fletcher, R.H. (1987). Predicting school failure and assessing early interventions withhigh-risk children. Journal of the American Academy of Child Psychiatry, 26, 758-763
Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus On Autism and Other Developmental Disabilities, 20(3), 180–189.
Knoche, L. L.,Sheridan, S. M., Clarke, B. L,Cline, D (2012).Getting Ready: Results of a Randomized Trial Of a Relationship Focused Internention on the Parent–Infant Relatonship in Rural Early Head Start. Infant Mental Health Journal, 33(5): 439–458
Meşe, İ. (2013). Engellenmiş Annelik: Zihinsel Engelli Çocukların Anneleri.
International Periodical for the Languages, Literature and History of Turkish or Turkic. 8 (12).
Özbek, A. ve Miral, S. (2003). Çocuk Ruh Sağlığı Açısından Prematürite. Çocuk Sağlığı ve Hastalıkları Dergisi, 46, 317-327.
Özmert, E. N. (2006). Erken çocukluk gelişiminin desteklenmesi-III. Aile. Çocuk Sağlığı ve Hastalıkları Dergisi, 49(3), 256-273.
Sucuoğlu, B., (1995). Özürlü Çocuğu Olan Anne-Babaların Gereksinimlerinin Belirlenmesi. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 2 (1), 10-18
Sucuoğlu, B.,&Aksaz, N. (1992). Otistik Çocuklara Bağımsız Yaşam Becerilerinin Kazandırılması. Psikoloji Dergisi, 27(7), 1526.
Sweet,M. A.,& Appelbaum M. I. (2004).Is Home Visiting an Effective Strategy? A Meta-Analytic Review of Home Visiting Programs for Families With Young Children. Child Development, 75(5) , 1435–1456
Sola C. ve Diken İ. (2008). Gelişimsel Gerilik Riski Altındaki Prematüre ve Düşük Doğum Ağırlıklı Çocuğa Sahip Annelerin Gereksinimlerinin Belirlenmesi. Özel Eğitim Dergisi. 9 (2), 21-36
Shonkoff, J. P. (2003). From neurons to neighborhoods: Old and new challenges for developmental and behavioral pediatrics. Journal of Developmental Behavioral Pediatr, 24(1), 70-6.
Tomasello N. M.,Mannıng A. R.,& Dulmus C. N. (2010). Family-Centered Early Intervention for Infants and Toddlers With Disabilities. Journal of Family Social Work, 13, 163-172.
Şimşek, H., Yıldırım, A. (2003). Sosyal bilimlerde nitel araştırma yöntemleri. Ankara: Seçkin Yayıncılık.
Walker, T. & Johnson, D.L. (1988). A follow-upevaluation of the Houston Prent-Child Development Center: Intelligence test results. Journal of Genetic Psychology, 149(3), 377-381.

Toplam 39 adet kaynakça vardır.

Ayrıntılar

Birincil Dil	İngilizce
Bölüm	Makaleler
Yazarlar	Özlem Gözün Kahraman Asya Çetin
Yayımlanma Tarihi	15 Temmuz 2015
Yayımlandığı Sayı	Yıl 2015

Kaynak Göster

APA	Gözün Kahraman O., & Çetin, A. (2015). Determining The Views and Needs Of Mothers Having A Baby With A Developmental Disability Over The Process They Experience After Diagnosis. International Journal of Early Childhood Special Education, 7(1), 97-128. https://doi.org/10.20489/intjecse.34518

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