A systematic review exploring perceptions of Tourette syndrome and tic disorders using the common-sense model of illness representations

Abstract

OBJECTIVE: Tic disorders (TDs) are neurodevelopmental conditions characterised by tics and typically appear during childhood. The Common Sense Model of Self-Regulation (CSM) provides a useful theoretical framework for understanding health beliefs in people with TDs - and parents' beliefs given 'shared' illness experiences between child and parent. Exploring health beliefs in adults can also provide insight as to how TD-related beliefs may evolve over time. This systematic review aimed to use the CSM to synthesise findings from published studies exploring illness perceptions in people with TDs and parents. METHODS: Six databases were searched for studies reporting findings assessing perceptions and beliefs of TDs that aligned with ≥1 CSM illness representation dimension. Forty-four studies were eligible and narratively synthesised. RESULTS: The evidence particularly highlights the negative consequences of TDs upon employment opportunities, schooling and education, social lives and relationships - with experiences of stigma and discrimination weaving throughout these consequences. Findings from several studies reflecting emotional responses report feelings of self-consciousness, abnormality, and anxiety arising from TDs. CONCLUSION: Findings have identified potential implications for research and practice, including identifying TD-related knowledge and beliefs that could be addressed through psychoeducation, and physiological and psychological outcomes which could be addressed through appropriate interventions. PROTOCOL REGISTRATION: PROSPERO CRD42023446800.