Life With Spina Bifida

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BACKGROUND: Having a chronic physical disability affects many aspects of a person’s life beyond his or her general health (Eiser 1997). Myelomeningocele, the most severe form of spina bifida (SB), is commonly associated with hydrocephalus, Chiari II malformation, diminished or absent sensation or motor function in the lower limbs, and impaired bowel and bladder control (S.L. Kinsman 2007). Many people with SB rely on some form of assistive technology for mobility, such as wheelchairs, crutches, or orthoses. Regardless of the type of assistive technology used, restricted mobility has been linked to poor social integration (Blum 1991; Dicianno 2009). People with SB may experience social disadvantages including reduced opportunities for peer relationships, a prolonged dependence on parents, and decreased community integration (Cate 2002). Children with SB have been found to be more socially immature and less engaged during social interactions than their same-aged peers without SB (Holmbeck 2002). It is also common for children to be hyperverbal, chatty, and articulate in conversation while the content of their speech is superficial or inappropriate for the context. This type of behavior pattern, called “cocktail-party syndrome,” is multifactoral in origin but may be cultivated in part by well-intentioned parents of children who lack the balancing negative reinforcement of peers when the speech becomes inappropriate (Tew 1979). Communication disorders may further complicate the ability of people with mobility disorders to hold coherent conversations and develop meaningful friendships (Burleson 1986). In one study of children with developmental disorders, 47.5% of caregivers reported that their child did not have even one cl... ... middle of paper ... ...bims.org/ combi/chart. S.L. Kinsman, M. V. J. (2007). Nelson Textbook of Pediatrics. Philadelphia, Saunders Elsevier. Shankland, S. (2010). "Facebook opens chat, and AIM plugs in." Retrieved June 21, 2019, from http://news.cnet.com/8301-30685_3-20000060-264.html. Solish, A., Minnes, P., Kupferschmidt, A. (2003). "Integration of Children with Developmental Disabilities in Social Activities." Journa on Developmental Disabilities 10(1): 115-121. Tew, B. (1979). "The “Cocktail Party Syndrome” in children with Hydrocephalus and Spina Bifida." International Journal of Language & Communication Disorders 14(2): 89-101. Verhoef, M., Post, M. W. M., van Asbeck, F. V. A., and Prevo, A. J. H. (2007). "Perceived Health in Young Adults with Spina Bifida." Developmental Medicine and Child Neurology 49: 192-197. WHO (1998). WHOQoL Study Protocol. WHO.

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