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The Impact of Tourette’s Syndrome in the School and the Family: Perspectives from Three Stakeholder Groups

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Abstract

This article analyzes the perceptions of Spanish health professionals, children with Tourette’s Syndrome (TS) and their parents about social, school and family problems related to the disorder. A qualitative research methodology was used involving Focus Groups (FGs) made up of children with TS (× 2 FGs), parents/caregivers of persons with TS (× 2 FGs) and health professionals (× 1 FG). The study highlights many of the principal areas of concern for persons with TS, parents/caregivers and health professionals that directly and indirectly add to the burden of living with the disorder. The results of the study point out that the stigma and social maladjustment in children with TS is caused in large part by a misunderstanding of the disorder by teachers and peers. Parents of children with TS especially emphasize tics, considering them to be the main cause of social maladaptation. The results suggest that interventions among parents, teachers and peers should be implemented towards a greater understanding of the disorder and its symptoms.

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Acknowledgments

We would like to express our heartfelt thanks to the Asociación Madrileña de Pacientes con Síndrome de Tourette y Trastornos Asociados and to the health professionals, persons with TS and caregivers who participed in the Focus Groups. We are grateful to Bernardino Fernández-Calvo, Noemi Sánchez Gracia, Iñigo González, Eva María Carrasco and Julian Benito-León for the reading and analysis of the transcriptions of Focus groups.

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Authors and Affiliations

  1. Faculty of Social Sciences, Salamanca University, Room 412, Miguel de Unamuno Campus, Salamanca, Spain

    Jesús Rivera-Navarro

  2. Department of Neurology, Burgos Hospital, Burgos, Spain

    Esther Cubo

  3. Neuro-Epidemiology Department, Health Institute Carlos III, Madrid, Spain

    Javier Almazán

  4. Facultad de Ciencias Sociales, Universidad de Salamanca, Despacho 412, Campus Miguel de Unamuno, Avda Francisco Tomas y Valiente S/N, 37007, Salamanca, Spain

    Jesús Rivera-Navarro

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  1. Jesús Rivera-Navarro
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Correspondence to Jesús Rivera-Navarro.

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Rivera-Navarro, J., Cubo, E. & Almazán, J. The Impact of Tourette’s Syndrome in the School and the Family: Perspectives from Three Stakeholder Groups. Int J Adv Counselling 36, 96–113 (2014). https://doi.org/10.1007/s10447-013-9193-9

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