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Original Articles

The experience of siblings of individuals with CHARGE syndrome

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References

  • Bågenholm, A., & Gillberg, C. (1991). Psychosocial effects on siblings of children with autism and mental retardation: A population-based study. Journal of Mental Deficiency Research, 35, 291–307. doi: 10.1111/j.1365-2788.1991.tb00403.x
  • Burton, S. L., & Parks, A. L. (1994). Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities. Social Work Research, 18, 179–185. doi: 10.1093/swr/18.3.178
  • Cicirelli, V. G. (1995). Sibling relationships across the life span. New York, NY: Plenum. doi: 10.1007/978-1-4757-6509-0
  • DePasquale, M. E. (2015). A sibling’s point of view: A participatory action research study of supports needed by siblings of individuals with intellectual and developmental disabilities (Doctoral dissertation). Retrieved from http://search.proquest.com.cmich.idm.oclc.org/docview/1540788746/fulltextPDF/92D35A7C0354BD0PQ/1?accountid=10181
  • Dew, A., Balandin, S., & Llewellyn, G. (2008). The psychosocial impact on siblings of people with lifelong physical disability: A review of the literature. Journal of Developmental and Physical Disabilities, 20, 485–507. doi: 10.1007/s10882-008-9109-5
  • Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50, 937–948. doi: 10.1111/j.1365-2788.2006.00928.x
  • Gibson, R. L., & Hartshorne, T. S. (1996). Childhood sexual abuse and adult loneliness and network orientation. Child Abuse & Neglect, 20, 1087–1093. doi: 10.1016/0145-2134(96)00097-X
  • Gold, N. (1993). Depression and social adjustment in siblings of boys with autism. Journal of Autism and Developmental Disorders, 23, 147–163. doi: 10.1007/BF01066424
  • Hartshorne, T. S. (1993). Psychometric properties and confirmatory factor analysis of the UCLA Loneliness Scale. Journal of Personality Assessment, 61, 182–195. doi: 10.1207/s15327752jpa6101_14
  • Hartshorne, T. S., Hefner, M. A., & Davenport, S. L. H. (2005). Behavior in CHARGE syndrome: Introduction to the special topic. American Journal of Medical Genetics Part A, 133A, 228–231. doi: 10.1002/ajmg.a.30541
  • Hartshorne, T. S., Hefner, M. A., Davenport, S. L. H., & Thelin, J. W. (Eds.). (2011). CHARGE syndrome. San Diego, CA: Plural.
  • Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107, 116–127. doi: 10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2
  • Janssen, N., Bergman, J. E. H., Swertz, M. A., Tranebjaerg, L., Lodahl, M., Schoots, J., … Hoefsloot, L. H. (2012). Mutation update on the CHD7 gene involved in CHARGE syndrome. Human Mutation, 33, 1149–1160. doi: 10.1002/humu.22086
  • Kober, R. (Ed.). (2010). Enhancing the quality of life of people with intellectual disabilities: From theory to practice. New York, NY: Springer.
  • McCubbin, H. I., & Patterson, J. (1996). Family Member Well-Being Index (FMWB). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (Eds.), Family assessment: Resiliency, coping, and adaptation: Inventories for research and practice (pp. 753–782). Madison, WI: University of Wisconsin.
  • McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping, and adaptation: Inventories for research and practice. Madison, WI: University of Wisconsin.
  • McCubbin, M. A., McCubbin, H. I., & Thompson, A. I. (1996). Family Hardiness Index (FHI). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (Eds.), Family assessment: Resiliency, coping, and adaptation: Inventories for research and practice (pp. 239–305). Madison, WI: University of Wisconsin.
  • Meadan, H., Stoner, J. B., & Angell, M. E. (2010). Review of literature related to the social, emotional, and behavioral adjustment of siblings of individuals with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 22, 83–100. doi: 10.1007/s10882-009-9171-7
  • Murphy, M. A. (1982). The family with a handicapped child: A review of the literature. Journal of Developmental & Behavioral Pediatrics, 3, 73–82. doi: 10.1097/00004703-198206000-00006
  • National Consortium on Deaf-Blindness. (2014). The 2013 National Child Count of Children and Youth who are Deaf-Blind. Retrieved from https://nationaldb.org/
  • Neece, C. L., Blacher, J., & Baker, B. L. (2010). Impact on siblings of children with intellectual disability: The role of child behavior problems. American Journal on Intellectual and Developmental Disabilities, 115, 291–306. doi: 10.1352/1944-7558-115.4.291
  • Neely-Barnes, S. L., & Graff, J. C. (2011). Are there adverse consequences to being a sibling of a person with a disability? A propensity score analysis. Family Relations, 60, 331–341. doi: 10.1111/j.1741-3729.2011.00652.x
  • Opperman, S., & Alant, E. (2003). The coping responses of the adolescent siblings of children with severe disabilities. Disability and Rehabilitation, 25, 441–454. doi: 10.1080/0963828031000069735
  • Pagon, R. A., Graham, J. M., Jr., Zonana, J., & Yong, S.-L. (1981). Coloboma, congenital heart disease, and choanal atresia with multiple anomalies: CHARGE association. The Journal of Pediatrics, 99, 223–227. doi: 10.1016/S0022-3476(81)80454-4
  • Pit-ten Cate, I. M., & Loots, G. M. P. (2000). Experiences of siblings of children with physical disabilities: An empirical investigation. Disability and Rehabilitation, 22, 399–408. doi: 10.1080/096382800406013
  • Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10, 65–84. doi: 10.1023/A:1016629500708
  • Russell, D., Peplau, L. A., & Ferguson, M. L. (1978). Developing a measure of loneliness. Journal of Personality Assessment, 42, 290–294. doi: 10.1207/s15327752jpa4203_11
  • Scorgie, K., Wilgosh, L., & Sobsey, D. (2004). The experience of transformation in parents of children with disabilities: Theoretical considerations. Developmental Disabilities Bulletin, 32, 84–110.
  • Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27, 699–710. doi: 10.1093/jpepsy/27.8.699
  • Smith, L. O., & Elder, J. H. (2010). Siblings and family environments of persons with autism spectrum disorder: A review of the literature. Journal of Child and Adolescent Psychiatric Nursing, 23, 189–195. doi: 10.1111/j.1744-6171.2010.00240.x
  • Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339–350.
  • Tolsdorf, C. C. (1976). Social networks, support, and coping: An exploratory study. Family Process, 15, 407–417. doi: 10.1111/j.1545-5300.1976.00407.x
  • Ünal, N., & Baran, G. (2011). Behaviors and attitudes of normally developing children toward their intellectually disabled siblings. Psychological Reports, 108, 553–562. doi: 10.2466/07.10.21.PR0.108.2.553-562
  • Vaux, A., Burba, P., & Stewart, D. (1986). Orientation toward utilization of support resources. Journal of Community Psychology, 14, 159–170. doi: 10.1002/1520-6629(198604)14:2<159::AID-JCOP2290140207>3.0.CO;2-H
  • 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 exploratory examination of key domains and dimensions of the revised FQOL Survey. Journal of Intellectual Disability Research, 53, 501–511. doi: 10.1111/j.1365-2788.2009.01164.x

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