Maxwell-Scott Melanie, O'Keeffe Fiadhnait, Eccles Fiona J R
Division of Health Research, Lancaster University, Lancaster, United Kingdom.
Department of Psychology, St Vincent's University Hospital, Dublin, Ireland.
Psychol Health. 2024 May 31:1-23. 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.
本系统评价和元民族志旨在研究儿童、成人及家庭如何应对抽动秽语综合征（TS）。
2022年10月完成了对四个数据库的系统检索。16篇论文符合纳入标准，并采用诺布利特和黑尔（1988年）的元民族志方法进行了综合分析。
构建了三个主题：重新定义自我和社会身份、控制抽动秽语综合征的外在表现以及挑战相关叙述。
研究结果表明，应对措施包括将TS与身份认同相结合的需求、对抽动症状进行控制以及挑战社会对TS的错误认知。父母和朋友提供的支持性环境能让个体为自己能够控制抽动症状而感到自豪，这有助于将TS积极融入身份认同。旨在改善对一种受污名化疾病的应对时，通过教育活动提高社会层面的认识很重要。建议开展进一步研究，例如了解注意力缺陷多动障碍等共病情况如何影响应对方式。
