Amerika'daki otizmli çocukların Avrupalı Amerikan ve Asyalı Amerikan ailelerinde ebeveynlerin kardeş ilişkilerini sosyalleştirmesi

Yıl 2010, , 193 - 213, 01.09.2010

Kara D. Sage And Brinda Jegatheesan Kara D. Sage

https://doi.org/10.20489/intjecse.107970

Öz

Bu çalışma Avrupalı Amerikan ve Asyalı Amerikan ailedeki ebeveynlerin nasıl kardeş ilişkilerini sosyalleştirdiğini araştırmıştır. Ailelerin otizm hakkındaki inanışlarını ve bu inanışların normal gelişim gösteren çocukların engelliliğe yönelik farkındalıklarının oluşması üzerine etkisini ve ebeveynlerin kardeşlik ilişkisi için beklentilerini açıklamaktayız. Ayrıca ebevenylerin kardeş ilişkilerinin sosyalleşmesindeki rolü belirtilmektedir. Analizler ebeveynlerle derinlemesine gerçekleştirilen mülakatlara dayanmıştır. Bulgular iki grup ebeveylerin inanç, beklenti ve uygulamalar konularında farklılıklar gösterdiklerini belirtmektedir. Kardeşlik ilişkisi çıktıları da iki grup ailede farklılık göstermiştir. Araştırma için yansımalar açıklanmaktadır.

Anahtar Kelimeler

Otizm, kardeşlik ilişkisi, Asyalı ve Avrupalı Amerikan aileleri.

Parents Socializing Sibling Relationships in European American and Asian American Families of Children with Autism in the United States

Öz

This study examined how parents in a European American and an Asian American family socialize sibling relationships. We describe parents' beliefs about autism and how these beliefs influence awareness-building of disability in their typically developing children and the expectations that parents have for sibling relationships. The role of parents in socializing sibling relationships is also described. Analyses were based on in-depth interviews with parents. Findings indicate that the two sets of parents differed in their beliefs, expectations, and practices. Sibling relationship outcomes also differed in the two families. Implications for research are described.

Anahtar Kelimeler

Autism, sibling relationship, Asian and European American families.

Kaynakça

• American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: American Psychiatric Association.
• Barbour, R. S. (2001). Checklists for improving rigor in qualitative research: A case of the tail wagging the dog? British Medical Journal, 322, 1115-8.
• Benderix, Y., & Sivberg, B. (2007). Siblings‟ experiences of having or brother or sister with autism and mental retardation: A case study of 14 siblings from five families. Journal of Pediatric Nursing, 22, 410–418.
• Bogdan, R.C. & Biklen, S.K. (1982). Qualitative research for education: An introduction to theory and methods. Boston: Allyn and Bacon.
• Braun, K. (2008). Beliefs and experiences of disability in young children who have siblings with autism: Pictorial and narrative representations. Master‟s thesis, University of Washington.
• Breslau, N. (1982). Siblings of disabled children: Birth order and age-spacing effects. Journal of
• Abnormal Child Psychology, 10, 85-95.
• Chan, S. & Lee, E. (2004). Families with South Asian roots. In Lynch, E.W., & Hanson, M.J. (Eds). Developing cross-cultural competence: A guide for working with children and their families. Baltimore: Paul H. Brooks Publishing Co.
• Chao, R. (1995). Chinese and European-American cultural models of the self reflected in mothers‟ child-rearing beliefs. Ethos, 23, 328–354.
• Chao, R (2000). The parenting of immigrant Chinese and European American mothers: Relations between parenting styles, socialization goals, and parenting practices. Journal of Applied Developmental Psychology, 21(2), 233-248.
• Cicirelli, V. G. (1994). Sibling relationships in cross-cultural perspective. Journal of Marriage and the Family, 56, 7–20.
• Dallas, E., Stevenson, J., & McGurk, H. (1993). Celebral-palsied children‟s interactions with siblings – II. Interactional structure. Journal of Child Psychology and Psychiatry, 34, 649-71.
• Driessnack, M (2005). Children‟s drawings as facilitators of communication: A meta- analysis. Journal of Pediatric Nursing, 20(6), 415-423
• Dyches, T., Wilder, L., Sudweeks, R., Obiakor, F., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34(2), 211-222.
• El-Ghoroury, N. & Romanczyk, R. (1999). Play interactions of family members towards children with autism. Journal of Autism and Developmental Disorders, 29, 249- 258.
• Gabel, S. (2004). South Asian Indian cultural orientations toward mental retardation. Mental Retardation, 42, 12-25.
• Gallagher, P. & Powell, T. (1989). Brothers and sisters: Meeting special needs. Topics in Early Childhood Special Education, 8(4), 24-37.
• Glasberg, B. (2000). The development of siblings‟ understanding of autism spectrum disorders. Journal of Autism and Developmental Disorders, 30, 143-156.
• Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Hawthorne.
• Goin-Kochel, R. & Myers, B. (2005). Congenital versus regressive onset of autism spectrum disorders: Parents‟ beliefs about causes. Focus on Autism and Developmental Disorders, 20, 169-179.
• Gold, N. (1993). Depression and social adjustment in siblings of boys with autism. Journal of Autism and Developmental Disorders, 23, 147-63.
• Gray, D. (1995). Lay conception of autism: Parents‟ explanatory models. Medical Anthropology, 16, 99-118
• Groce, N. & Zola, I. (1993). Multiculturalism, chronic illness, and disability. Pediatrics, 91, 1048-1055.
• Jegatheesan, B. (2005). Ways of being in home and community: Language socialization of children with autism in multilingual South Asian immigrant families. Ph.D. dissertation, University of Illinois at Urbana-Champaign.
• Jegatheesan, B. (2009a). Muslim children with autism learn to pray. In Shweder, R., Bidell, T., Dailey, A., Dixon, S., Miller, P. & Modell, J. (Eds.), The Child: An Encyclopedic Companion. Chicago: University of Chicago Press.
• Jegatheesan, B. (2009b). Cross-cultural issues in parent-professional interactions: A qualitative study of perceptions of Asian American mothers of children with developmental disabilities. Research and Practices for Persons with Severe Disabilities, 34(3), 123-136.
• Jegatheesan, B., Miller, P.J., & Fowler, S. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25(2), 98-109.
• Jegatheesan, B., Fowler, S., & Miller, P. (in press). From symptom recognition to services: How South Asian Muslim immigrant families navigate autism. Disability and Society.
• Jegatheesan, B. & Witz, K. (under review). Religion and spirituality in a Muslim family with a child with autism: A case study/portrait of a mother and the sibling dyad.
• Kaminsky, L. & Dewey, D. (2001). Sibling relationships of children with autism. Journal of Autism and Developmental Disorders, 31, 399-410.
• Kramer, L. (2010). The essential ingredients of successful sibling relationships: An emerging framework for advancing theory and practice. Child Development Perspectives, 4, 80-86.
• Kramer, L. & Bank, K. (2005). Sibling relationship contributions to individual and family well-being: Introduction to the special issue. Journal of Family Psychology, 19, 483-485.
• Lincoln, Y. & Guba, E. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications.
• Lingam, R., Simmons, A., Andrews, N., Miller, E., Stowe, J., & Taylor, B. (2003). Prevalence of autism and parentally reported triggers in North East London population. Archives of Disease in Childhood, 88, 666-670.
• Markus, H. R., & Kitayama, S. (1991). Culture and the self: Implications for cognition, emotion, and motivation. Psychological Review, 98, 224–253.
• McHale, S. & Gamble, W. (1989). Sibling relationships of children with disabled and nondisabled brothers and sisters. Developmental Psychology, 25, 421-9.
• McHale, S., Sloan, J., & Simeonsson, R. (1986). Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters. Journal of Autism and Developmental Disorders, 16, 399-413.
• Meyer, D. & Vadasy, P. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore, MD, US: Paul H Brookes Publishing.
• Miles, M., & Huberman, A. (1994). Qualitative data analysis. Thousand Oaks, CA: Sage Publications.
• Orsmond, G., & Seltzer, M. (2000). Brothers and sisters of adults with mental retardation: Mental Retardation, 105, 486-508.
• Orsmond, G. & Seltzer, M. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews, 13, 313–320.
• Park, J., & Turnbull, A. (2001). Quality of partnerships in service provision for Korean American parents of children with disabilities: A qualitative inquiry. The Journal of the Association for Persons with Severe Handicaps, 26(3), 158-170.
• Ross, P. & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31, 77–86.
• Sage, K. & Jegatheesan, B. (2010). Perceptions of siblings with autism and relationships with them: European American and Asian American siblings draw and tell. Journal of Intellectual and Developmental Disability, 35(2), 92-103.
• Sage, K. & Jegatheesan, B. (under review). Play interactions between children with autism and their siblings in a European American and an Asian American family.
• Shaked, M. (2005). The social trajectory of illness: Autism in the ultraorthodox community in Israel. Social Science & Medicine, 61, 2190–2200.
• Skinner, D., Bailey, D., Correa, V., & Rodriguez, P. (1999). Narrating self and disability: Latino mothers‟ construction of identities vis-à-vis their children with special needs. Exceptional Children, 65(4), 481-495.
• Skinner, D., Correa, V., Skinner, M., & Bailey, D. (2001). Role of religion in the lives of Latino families of young children with developmental delays. American Journal on Mental Retardation, 106, 297–313.
• Stake, R. (2006). Multiple case study analysis. New York: The Guilford Press.
• Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339-50.
• Strain, P. & Danko, C. (1995). Caregivers' encouragement of positive interaction between preschoolers with autism and their siblings. Journal of Emotional and Behavioral Disorders, 3, 2-11.
• Tew, B. & Lawrence, K. (1973). Mothers, brothers, and sisters of patients with spina bifida. Developmental Medicine and Child Neurology, 15, 69-76.
• Uba, L. (1994). Asian Americans: Personality, patterns, identity, and mental health. New York: Guildford Press.
• Van Riper, M. (2000). Family variables associated with well-being in siblings of children with Down Syndrome. Journal of Family Nursing, 6, 267-86.
• Verte, S., Roeyers, H., & Buysse, A. (2003). Behavioral problems, social competence and self-concept in siblings of children with autism. Child: Care, Health and Development, 29, 193-205.
• Welterlin, A., & LaRue, R. (2007). Serving the needs of immigrant families of children with autism. Disability and Society, 22, 747-60.
• Zionts, L. & Zionts, P. (2003). Multicultural aspects in the education of children and youth with autism and other developmental disabilities. Focus on Autism and Other Developmental Disabilities, 18(1), 2-3.