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. 2020 Aug;30(10):1480-1490.
doi: 10.1177/1049732320915444. Epub 2020 Jun 1.

Experiences of Tourette Syndrome Caregivers With Supportive Communication

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Experiences of Tourette Syndrome Caregivers With Supportive Communication

Eryn Travis et al. Qual Health Res. 2020 Aug.

Abstract

The experiences of Tourette syndrome (TS) caregivers with supportive communication are examined in this qualitative investigation. TS is a childhood-onset neurodevelopmental disorder marked by a combination of involuntary verbal and motor tics lasting for more than 1 year. Although individuals are impacted the most by TS, the stress for caring for a child with TS takes an emotional and physical toll on the caregiver. Eleven participants shared their experiences with receiving supportive communication by taking part in semi-structured interviews. Data analysis yielded three themes: (a) TS caregivers describe their experiences as a struggle; (b) they seek out specific social support from friends and families; and (c) they frequently receive social support that increases instead of reducing stress.

Keywords: United States; caregivers; caretaking; children; communication; community and public health; families; grounded theory; lived experience; health; neurological disorders; neurology; qualitative; quality of life; semi-structured interviews; social support.

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