Tic Disorder, Childhood, Tics, Tourette Syndrome, Tourette Syndrome in Adolescence, Tourette Syndrome in Children
Conditions
Keywords
Stigma
Brief summary
The goal of this qualitative study is to understand the challenges of stigmatization and discrimination in children and young adults with Chronic Tic Disorders (CTD), including Tourette Syndrome. Measuring and understanding how stigma affects those with CTD will help inform future work.
Detailed description
This study will utilize a phased approach, where (1) Narrative and thematic content data will be obtained through in-depth qualitative interviews of CTD stakeholders. (2) Based on these results, a novel scale will be developed through the Delphi Method with CTD stakeholders. (3) Preliminary analyses of the scale's psychometric properties.
Interventions
None listed
Sponsors
Tourette Association of America
University of Rochester
Wake Forest University Health Sciences
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
8 Years to No maximum
Healthy volunteers
No
Inclusion criteria
CTD Cohort 1. Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria 2. 8-30 years old. Parent/caregivers, supporters, medical providers, advocate cohort (s) 1. Involved in the care of a child, youth or young adult with CTD 2. The known person with CTD has had tics for more than a year at the time of screening
Exclusion criteria
CTD Cohort
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores | Month 7 | Confirmatory factor analysis will be used to assess the factor structure of the hypothesized domains. Mean TD-STIGMA scores will be calculated. Internal consistency (both overall and within each domain) will be evaluated using Cronbach's alpha. Intraclass correlation will be used to evaluate test-retest reliability by retesting a subset of participants (n=20) two weeks after test administration. Some items may be removed from the list based on the results of the factor analysis, internal consistency, and test-retest evaluation. Both convergent validity and known-group validity will be evaluated. Analyses will use SAS 9.3. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Qualitative Interviews | 3 hours | Stakeholder interviews will be audio-recorded, transcribed, and input into NVivo software for qualitative analysis. Transcripts will be compared with original recordings to ensure accuracy. Interviews will be analyzed using deductive thematic content analysis practices to identify emerging themes and subthemes. |
| Tourette Discrimination-Stigmatization (TD-STIGMA) Scale psychometric properties | Month 4 | A de-identified summary document of thematic content and narrative content analysis from Aim 1 will be securely emailed to stakeholders. Content will be alphabetized to avoid introducing bias. Stakeholders will be blind-copied to maintain anonymity. Using the Delphi Method, they will be asked to prioritize responses, provide feedback and propose solutions. The feedback process will continue until there is an 80% consensus among stakeholders. The outcome will be a close-ended TD-STIGMA scale. The Flesch Reading Ease score and Flesch-Kincaid Grade level will be used to assess questionnaire readability. |
Countries
United States
Outcome results
None listed