ERIC Number: EJ1160666
Record Type: Journal
Publication Date: 2017-Nov
Abstractor: As Provided
Attendance at Fragile X Specialty Clinics: Facilitators and Barriers
Kidd, Sharon A.; Raspa, Melissa; Clark, Renée; Usrey-Roos, Holly; Wheeler, Anne C.; Liu, Jessica A.; Wylie, Amanda; Sherman, Stephanie L.
American Journal on Intellectual and Developmental Disabilities, v122 n6 p457-475 Nov 2017
The objectives were to describe the demographic characteristics of children with Fragile X syndrome (FXS) and to determine predictors of attendance at Fragile X (FX) clinics. Findings from the Community Support Network (CSN) and Our Fragile X World (OFXW) samples showed that children who attended FX Clinics were mostly male, high-school aged or younger, and white, non-Hispanic. Using logistic regression models, awareness about FX Clinic services, guardian education, and income (CSN), and child age, family income, and total number of co-occurring conditions (OFXW) were predictors of clinic attendance. Demographic and child characteristics accounted for a large portion of the explained variance. Importantly, symptom severity and parent knowledge about services were independent predictors beyond the demographic characteristics of families.
Descriptors: Genetic Disorders, Predictor Variables, Individual Characteristics, Participation, Clinics, Children, Adolescents, Gender Differences, Age Differences, Racial Differences, Ethnicity, Regression (Statistics), Intellectual Disability, Parent Background, Educational Attainment, Family Income, Comorbidity, Severity (of Disability), Knowledge Level, Socioeconomic Status
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://www.aaiddjournals.org/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A