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Abstract
Current research on children with Fragile X Syndrome (FXS) lacks inclusion of qualitative outcomes on the child’s daily occupational performance. Standardized measurements are frequently utilized and provide useful information, however, can be less sensitive to change (Berry Kravis et al., 2013) and miss capturing family perspectives and improvements within meaningful occupations. This research incorporates family perspectives via semi-structured interviews to promote an in-depth understanding about FXS and its impact on child and family occupations in addition to standardized assessment scores through in-depth case study analysis. This study used a mixed method research design examining four male participants who were given sertraline in an in-depth case study analysis. Caregivers were interviewed using a semi-structured interview protocol at baseline and at six months post-treatment to discuss their child, occupations, and any potential impacts of sertraline. Baseline and post-testing standardized assessment results were compared to the occupation centered semi-structured interviews. The data was collected from a pre-existing database in a previous study determining the outcome measures of sertraline. Dedoose software was used to code for categories and themes found in the FXS family interviews. Results indicated that standardized assessments have limited sensitivity to fully capture the lived experiences of families with FXS. Standardized assessments test for performance skills that may not necessarily translate to daily occupations as reported by families. While future practitioners should use standardized assessments in their evaluations, they should also include what families report in their daily lives to fully conclude the child’s abilities to participate and engage in their daily occupations
Department
Occupational Therapy
Faculty Advisor
Laura Greiss Hess, PhD, OTR/L
Publication Date
2018
Sponsorship/Conference/Institution
Dominican University of California
City
San Rafael, CA
Keywords
Occupation, Fragile X Syndrome, FXS, Family Perspectives, Sertraline, Interviews
Disciplines
Occupational Therapy