Purposes: Children and adolescents who are diagnosed with Tourette’s Syndrome (TS) can experience uncontrollable motor and vocal tics in front of others resulting in embarrassment. The research aims were to (1) describe the experience of embarrassment from the perception of the child and adolescent with Tourette’s, and (2) determine which self-identified empowerment strategies children and adolescents with TS use to overcome embarrassment. Theoretical Framework: Husserl’s phenomenological method guided the research. Subjects: Eighteen participants between the ages of nine and seventeen, who were English-speaking, and racially diverse were recruited from a Tourette’s Center located in a metropolitan area in the Midwest. Methods: Semi-structured interviews were conducted with children and adolescents after obtaining parental consent and child assent. Interviews were audiotaped and transcribed verbatim and four participants were consulted for member checks. Streubert’s (1991) method guided the data analysis. Results: Five themes regarding the lived experience of embarrassment emerged. Embarrassment with TS is: 1) being caught ticcing 2) losing control over your tics in public 3) feeling different than others, 4) being uneasy about disclosing your tics to others, and 5) an experience where the intensity of embarrassment with TS decreases over time. Five themes regarding which self-empowerment strategies emerged. Becoming self-empowered over embarrassment with TS is to: 1) use distraction, 2) use of relaxation techniques 3) talk about your feelings with others, 4) adopt normalizing behaviors, and 5) accept yourself. Conclusions: The embarrassment that children and adolescents with Tourette’s Syndrome experience is part of the normalization process they undertake to cope with their disorder. One learns to accommodate to the embarrassment experienced with TS over time and therefore is able to dull the intensity of the embarrassment during subsequent embarrassing moments. Professionals can assist in making the process less painful for the child or adolescent with Tourette’s Syndrome and their families.
Session #1212 - Adolscent Issues in the Community
The 29th Annual MNRS Research Conference (April 1-4, 2005)