Department of Pediatrics, West China Second University Hospital, Sichuan University, Chengdu, China.
Key Laboratory of Birth Defects and Related Diseases of Women and Children, Ministry of Education, Sichuan University, Chengdu, 610041, China.
Sci Rep. 2024 Mar 18;14(1):6499. doi: 10.1038/s41598-024-57062-6.
Parents' beliefs and attitudes toward their children with Tourette syndrome (TS) influence treatment-seeking behaviors. This study aimed to explore and describe the Chinese parents' perspectives on the causes of TS for their children. A qualitative study using semi-structured interviews was conducted with the parents of TS patients from a children's hospital in western China from June to July 2021, and thematic analysis was performed to transcribe interviews and identify themes. A total of 13 participants were interviewed in this study. Five themes were developed in relation to the cognition of the causes of TS in parents, including physical problems, parenting and education problems, mental problems, bad habits, and neurological problems. Due to the insufficient awareness of TS, most parents repeatedly seek medical advice that they regarded the symptoms as physical problems or neurological problems. They generally felt guilty and blamed themselves for their parenting styles and education methods. And some parents attributed it to the poor psychological quality or the bad habits of children. Study findings showed a lack of scientific understanding of the causes of TS among parents further hindered the timely effective treatment for patients and affected the family relationships, which highlights the importance of public education and raising awareness of the disease.
父母对患有妥瑞氏症(TS)孩子的信念和态度会影响其寻求治疗的行为。本研究旨在探讨和描述中国父母对孩子患 TS 原因的看法。2021 年 6 月至 7 月,采用半结构式访谈法对中国西部一家儿童医院的 TS 患儿家长进行了定性研究,对访谈内容进行主题分析以识别主题。本研究共访谈了 13 名参与者。与父母对 TS 病因的认知有关,确定了 5 个主题,包括身体问题、育儿和教育问题、心理问题、不良习惯和神经问题。由于对 TS 的认识不足,大多数父母反复求医,他们将症状视为身体问题或神经问题。他们普遍感到内疚,并因自己的育儿方式和教育方法而自责。一些家长则将其归因于孩子较差的心理素质或不良习惯。研究结果表明,父母对 TS 病因缺乏科学认识,进一步阻碍了对患者的及时有效治疗,影响了家庭关系,这凸显了开展公众教育和提高对该疾病认识的重要性。