ERIC Number: EJ909014
Record Type: Journal
Publication Date: 2010-Nov
Abstractor: As Provided
Reference Count: 0
Using a Parent Survey to Advance Knowledge about the Nature and Consequences of Fragile X Syndrome
Bailey, Donald B., Jr.; Raspa, Melissa; Olmsted, Murrey G.
American Journal on Intellectual and Developmental Disabilities, v115 n6 p447-460 Nov 2010
Understanding the nature and consequences of intellectual and developmental disabilities is challenging, especially when the condition is rare, affected individuals are geographically dispersed, and/or resource constraints limit large-scale studies involving direct assessment. Surveys provide an alternative methodology for gathering information but must be carefully designed and interpreted in light of obvious limitations. In this paper we discuss the potential of surveys in understanding a disabling condition; delineate characteristics of successful survey research; describe a survey of families of individuals with fragile X syndrome; and synthesize major findings. The survey has provided new information about the nature and consequences of fragile X syndrome in a cost-effective fashion, suggesting that survey methodology has a useful place in creating new knowledge about intellectual and developmental disabilities.
Descriptors: Mental Retardation, Developmental Disabilities, Genetic Disorders, Surveys, Parents, Research Methodology, Psychometrics, Knowledge Level, Data Collection, Child Rearing
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: http://aaidd.allenpress.com
Publication Type: Journal Articles; Reports - Evaluative
Education Level: N/A
Authoring Institution: N/A