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Daily Experiences and Challenges of TS

Posted on 6 March 2015

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An Exploration of the Daily Experiences and Challenges Faced by Parents and Caregivers of Children with Tourette Syndrome

An Exploration of the Daily Experiences and Challenges Faced by Parents and Caregivers of Children with Tourette Syndrome
 TS is often distorted and sensationalised in the media for entertainment purposes. This portrayal can lead to misconceptions about the syndrome; for example that all those with TS exhibit coprolalia (swearing tics), as well as discrimination and prejudice which can impact on the individual’s self-esteem and their relationships with others (Calder-Sprackman, Sutherland & Doja, 2013).
TS has serious and far-reaching effects on the quality of life of the person with the condition and those around them. For example, Cooper and Livingstone (2003) highlighted that parents of children with TS experience high care giver burden (Chowdhury, 2004). Moreover, Eden and Črnčec (2009) summarise the challenges of managing TS including: the unfamiliarity of the disorder by health care professionals; inconsistencies in the diagnosis and care plan; and difficulties in both identifying and treating co-morbid conditions.
The body of literature relating to the impact of TS on parents is small in comparison to that of other conditions, and there have been no previous published studies exploring the daily experiences of parents or care givers of children who have TS.
The present study aimed to contribute to the evidence base relating to TS by giving a voice to parents and care givers who have a child with TS
Method
Fifteen parents and caregivers of children with TS participated in a semi-structured interview about their experiences, the challenges they face, and the support mechanisms they have found to be most helpful. The interview transcripts were analysed utilising Interpretative Phenomenological Analysis.
Results
Nine superordinate themes emerged from the transcripts which represented shared experiences of the participants: coping with tics; feeling judged; feeling helpless; feeling dismissed; impact on relationships; education; support and services; misconceptions and lack of understanding; and practicalities of parenting a child with TS. Some of the examples of subthemes are listed below.
Coping with tics-parents reported finding it difficult to cope with the tics their child displays and not knowing how to respond to them. Loud, dangerous and rude tics were raised as being of particular concern.
Feeling dismissed- Some parents reported feeling that their child’s difficulties were dismissed by professionals and services when attempting to receive a diagnosis for their child’s difficulties. Many reported feeling that their child’s symptoms were trivialised.
Impact on relationships- The impact that TS had on a wide range of inter-personal relationships was raised as a concern. Specifically, sub themes were elicited with regards to the relationship between caregivers; the impact on the sibling relationship; and the effect on the child’s social life
Education- Many parents talked about the importance of explaining TS to other parents and pupils.
Support and Services-The interviews highlighted a number of sub-themes relating to the support and services received by families who have a child with TS with many expressing that their experiences of services are inadequate for people with TS.  Families emphasised the importance of building networks with other parents of children with TS. In addition, parents raised their Frustration and disappointment at the fact that medication was often offered to their child with very few alternative treatment options
Conclusion
The research has highlighted a number of recurrent themes, and by highlighting these it is hoped that these findings will be beneficial to parents and professionals alike in increasing the awareness of the challenges that parenting a child with TS brings. Furthermore, it is hoped that by increasing the knowledge about the support that parents find to be helpful or unhelpful, more tailored services could be developed for these families.

This research was completed by Rachel Brown as part of the MSc in Research in Clinical Psychology at the University of Hertfordshire and was supervised by Dr Amanda Ludlow. I would like to thank each of the participants who took the time to take part in this study and discuss their experiences with me. Special thanks to Tourette’s Action for supporting this work

References
Calder-Sprackman, S., Sutherland, S., & Doja, A. (2014). The Portrayal of Tourette Syndrome in Film and Television. The Canadian Journal of Neurological Sciences, 41(2), 226-232.

Chowdhury, U. (2004). Tics and Tourette Syndrome: A Handbook for Parents and Professionals. Jessica Kingsley Publishers.

Cooper, C., & Livingston, G. (2003). Psychological morbidity and caregiver burden in parents of children with Tourette's disorder and psychiatric comorbidity. Journal of the American Academy of Child & Adolescent Psychiatry, 42(11), 1370-1375.

Eapen, V., & Črnčec, R. (2009). Tourette syndrome in children and adolescents: special considerations. Journal of psychosomatic research, 67(6), 525-532.

 


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