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探讨受脊髓栓系综合征影响的学龄儿童的生活经历:一项阐释性定性研究。

Exploring the life experiences of school-aged children afflicted by tethered spinal cord syndrome: An interpretative qualitative study.

机构信息

Nursing Department, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, Zhejiang, China.

Department of Paediatrics, Zhejiang Taizhou Hospital, Wenzhou Medical University, Taizhou, Zhejiang, China.

出版信息

Health Expect. 2024 Feb;27(1):e13969. doi: 10.1111/hex.13969.

Abstract

BACKGROUND

Children affected by tethered cord syndrome (TCS) encounter multifaceted challenges encompassing educational, familial and social spheres, underscoring the significance of a holistic comprehension of their subjective emotional well-being and life encounters. Nonetheless, healthcare professionals tend to prioritise the physical functionality of the afflicted individuals throughout the treatment and rehabilitation process, often neglecting the emotional experiences and requirements of these children as they transition into posthospitalization phases.

AIM

To advance the subjective experiences and perceptions of children with TCS upon reintegration into their families, educational institutions and wider societal contexts subsequent to their discharge from medical facilities.

METHODS

The study was conducted at the Children's Hospital in Zhejiang. Twelve children aged 8-15 with TCS were included in the study. The research design used an interpretative qualitative approach, utilising semi-structured interviews as the primary data collection method. Data analysis was performed using reflexive thematic analysis, facilitating a comprehensive exploration of emerging themes and patterns.

RESULTS

Four major themes (and seven subthemes) were identified from the findings: (1) growing pains (a shameful secret, distance between ideal and reality); (2) inappropriate expressions of familial affection (knowing is not understanding, unspeakable guilt); (3) social estrangement (uncomfortable distinctions, familiar stranger) and (4) striving for independence and consistency.

CONCLUSIONS

Children affected by TCS exhibit internal sensitivity and challenges in self-development, family dynamics and social interactions. They aspire to attain a future characterised by independence and freedom, akin to that of their typically developing peers. These findings can help health professionals, families and educators gain a deeper understanding of what it takes to be a child with TCS, and the findings can also serve as a platform for interventions that seek to promote self-expression in these children so that they can experience life as a meaningful and positive process.

PATIENT OR PUBLIC CONTRIBUTION

This study received support from children with TCS and their guardians during data collection, as well as from the head nurse of the unit. Coresearchers also contributed to design, data collection, analysis and writing.

摘要

背景

患有脊髓栓系综合征(TCS)的儿童在教育、家庭和社会等多个领域都面临着挑战,这突显了全面了解他们主观情感福祉和生活经历的重要性。然而,在治疗和康复过程中,医疗保健专业人员往往更关注患者的身体功能,而忽略了这些孩子在从医院出院后进入到住院后阶段时的情感体验和需求。

目的

深入了解 TCS 患儿在重返家庭、教育机构和更广泛的社会环境后的主观体验和认知。

方法

本研究在浙江大学儿童医院进行。研究纳入了 12 名 8-15 岁的 TCS 患儿。研究采用解释性定性方法,主要采用半结构式访谈收集数据。使用反思性主题分析进行数据分析,以全面探索新兴主题和模式。

结果

从研究结果中确定了四个主要主题(和七个子主题):(1)成长的烦恼(一个羞耻的秘密,理想与现实之间的距离);(2)不恰当的亲情表达(知而不解,难言的愧疚);(3)社会隔阂(不舒服的区别,熟悉的陌生人);(4)争取独立和一致性。

结论

患有 TCS 的儿童表现出内心的敏感和自我发展、家庭动态和社会互动方面的挑战。他们渴望拥有一个独立自主、自由自在的未来,就像他们那些正常发育的同龄人一样。这些发现可以帮助卫生专业人员、家庭和教育工作者更深入地了解 TCS 患儿的需求,也可以为促进这些儿童自我表达的干预措施提供平台,使他们能够体验到有意义和积极的生活过程。

患者或公众贡献

本研究在数据收集过程中得到了 TCS 患儿及其监护人以及该科室护士长的支持。共同研究者也为设计、数据收集、分析和撰写做出了贡献。

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