青少年妥瑞氏症患者的社会适应经验。

Social adjustment experiences of adolescents with Tourette syndrome.

机构信息

Department of Nursing, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan.

Division of Pediatric Neurology, College of Medicine, Chang Gung Children's Hospital, Chang Gung University, Taoyuan, Taiwan.

出版信息

J Clin Nurs. 2019 Jan;28(1-2):279-288. doi: 10.1111/jocn.14564. Epub 2018 Jul 23.

Abstract

AIMS AND OBJECTIVES

To explore and describe the experience of social adjustment of adolescents with Tourette syndrome in Taiwan.

BACKGROUND

Although Tourette syndrome is a non-life-threatening disease, the inherent difficulties in controlling tics and comorbidities can cause long-term physical and psychological issues, as well as social maladjustment among adolescents. Good social adjustment can promote mental health among adolescents. Currently, it is not clear how adolescents with Tourette syndrome can self-adjust and maintain harmonious social interaction with others.

DESIGN

Descriptive phenomenological approach was used in this study. Four criteria were applied to establish the trustworthiness or methodological rigour.

METHODS

Sixteen adolescents with Tourette syndrome were recruited by purposive sampling from a medical centre in Northern Taiwan. Semistructured one-on-one interviews were performed from March 2014-April 2015 for data collection. Every participant was interviewed once or twice, and each interview lasted for duration of around 60-90 min. Data were analysed with Giorgi's phenomenological method for data analysis.

RESULTS

Three themes were identified from the adolescent' interviews. The themes were included visible and invisible destitution, moulding a socially acceptable self and coexisting friends and foes.

CONCLUSIONS

Adolescents with Tourette syndrome experienced that tics are often not understood nor accepted during social interactions with others. However, with age and autonomy of adolescents, they were able to adjust and develop a socially acceptable body image and maintain amicable social interactions with others. Accompanied by positive thinking, support from friends and families, the adolescents could achieve good social adjustments for living with Tourette syndrome.

RELEVANCE TO CLINICAL PRACTICE

The experiences and feelings highlighted in this study can bring awareness to nurses and healthcare professionals for developing interventions that promote healthy social adjustment and mental health for adolescents with Tourette syndrome.

摘要

目的和目标

探索和描述台湾抽动秽语综合征青少年的社会适应体验。

背景

尽管抽动秽语综合征不是危及生命的疾病,但控制抽搐和合并症固有的困难会导致青少年长期出现身体和心理问题以及社会适应不良。良好的社会适应可以促进青少年的心理健康。目前,尚不清楚抽动秽语综合征青少年如何自我调整并与他人保持和谐的社会互动。

设计

本研究采用描述性现象学方法。应用了四个标准来建立可信度或方法严谨性。

方法

通过目的性抽样,从台湾北部的一家医疗中心招募了 16 名抽动秽语综合征青少年。从 2014 年 3 月至 2015 年 4 月,进行半结构式一对一访谈以收集数据。每个参与者接受一次或两次访谈,每次访谈持续约 60-90 分钟。使用 Giorgi 的现象学数据分析方法对数据进行分析。

结果

从青少年的访谈中确定了三个主题。这些主题包括可见和不可见的贫困、塑造社会可接受的自我以及共存的朋友和敌人。

结论

抽动秽语综合征青少年在与他人的社会互动中经历了抽搐常常不被理解或接受。然而,随着青少年年龄的增长和自主性的增强,他们能够调整并发展出社会可接受的身体形象,并与他人保持友好的社会互动。伴随着积极的思考、朋友和家人的支持,青少年可以很好地适应抽动秽语综合征的生活。

对临床实践的意义

本研究中强调的经验和感受可以使护士和医疗保健专业人员意识到,需要制定干预措施,促进抽动秽语综合征青少年的健康社会适应和心理健康。

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