Department of Psychology, Sport and Geography, University of Hertfordshire, Hatfield, United Kingdom.
www.neuro-diverse.org, Durbuy, Belgium.
PLoS One. 2024 Jan 2;19(1):e0292742. doi: 10.1371/journal.pone.0292742. eCollection 2024.
This is the first study to systematically explore the lived experiences of sudden and new onset of severe functional tics from the perspective of the mother's experiences and describes their attempts to access support services in the United Kingdom.
Twenty-One mothers of young people aged between 12 to 17 years with functional tic-like behaviour (FTLB) took part in semi-structured interviews. Thematic analysis of the transcribed interviews revealed gaps and inconsistencies within the process of gaining access to professional services and a lack of support for the management of tics and functional tic-like movements, in addition to highlighting the impact it had on daily family life.
The themes generated included the occurrence and development of tics, the severity and intensity of symptoms, the psychological impact on the family and the need to make recommendations for a clear care pathway. Managing the impact of the FTLB and co-occurring conditions such as suicidal ideation and self-harm, as well as the physical and emotional trauma, commonly contributed to feelings of isolation and helplessness, which impacted negatively on the family's ability to function and participate in society.
The findings emphasize the urgent need to create a clear management pathway for those experiencing FTLB, including the need for more professionals with relevant knowledge, to improve the dialogue with families during the referral process, whilst prioritising the treatment of anxiety and other identified mental health concerns.
这是第一项从母亲的角度系统探讨突发和新出现的严重功能性抽搐的真实体验，并描述他们在英国寻求支持服务的尝试的研究。
21 名 12 至 17 岁患有功能性抽搐样行为（FTLB）的年轻人的母亲参与了半结构化访谈。对转录访谈的主题分析揭示了获得专业服务的过程中的差距和不一致，以及缺乏对抽动和功能性抽搐样运动的管理的支持，除了强调其对日常生活的影响。
生成的主题包括抽搐的发生和发展、症状的严重程度和强度、对家庭的心理影响以及为明确的护理途径提出建议的需要。管理 FTLB 和共病（如自杀意念和自残）的影响，以及身体和情感创伤，通常导致孤立和无助的感觉，这对家庭的功能和参与社会的能力产生负面影响。
这些发现强调了为经历 FTLB 的人创建明确的管理途径的迫切需要，包括需要更多具有相关知识的专业人员，以改善转诊过程中与家庭的对话，同时优先考虑治疗焦虑和其他已确定的心理健康问题。
