Coping with Tourette's syndrome: a meta-ethnography of individual and family perspectives

• Published in: Psychology & health 2024-05, p.1-23
• Main Authors: Maxwell-Scott, Melanie, O'Keeffe, Fiadhnait, Eccles, Fiona J R
• Format: Article
• Language: English
• ISSN: 0887-0446; 1476-8321
• DOI: 10.1080/08870446.2024.2360126

This systematic review and meta-ethnography aimed to examine how children, adults and families cope with Tourette's syndrome (TS). A systematic search of four databases was completed in October 2022. Sixteen papers met the inclusion criteria and were synthesised using Noblit and Hare's (1988) meta-ethnographic approach. Three themes were constructed: redefining the self and social identity, controlling the visible presentation of Tourette's syndrome, and challenging the narrative. Findings indicate that coping involves the need to integrate TS with identity, to exert control over tics and to challenge the misrepresentations of TS in wider society. A supportive environment provided by parents and friends enables individuals to feel proud that they can control their tics, and this allows for the positive integration of TS into identity. Raising awareness at a societal level through educational campaigns is important when aiming to improve coping with a stigmatised condition. Further research is recommended, for example, to understand how common co-occurring conditions, such as attention deficit hyperactivity disorder, impact coping.