Title

Living with Fragile X Syndrome: Occupations as an Outcome Measure in a Clinical Trial

Graduation Date

5-2018

Document Type

Master's Thesis

Degree Name

Master of Science in Occupational Therapy

Department or Program

Occupational Therapy

Department or Program Chair

Julia Wilbarger, Ph.D., OTR/L

First Reader

Laura Greiss Hess, Ph.D., OTR/L

Second Reader

Julia Wilbarger, Ph.D., OTR/L

Abstract

The purpose of this study was to evaluate the use of semi-structured interviews as an outcome measure in a clinical trial for children with fragile X syndrome (FXS). A qualitative approach was used to analyze twenty-five parent interviews with children with FXS who participated in a double-blind medication trial. Each participant received either sertraline or a placebo. The aim of this research was to assess differences in occupational functioning in the sertraline group and placebo group, that may not have been detected with the use quantitative outcome measures alone. Results showed greater improvements in the sertraline group in areas of behavior, social participation, sensory-related behaviors, receptive language, education and family impact. The study’s findings support the use of semi-structured interviews as an additional outcome measure in a medication trial. The qualitative methods add voice and context to the family experiences through an occupation-centered lens.

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