技术生命线:小儿长期气管造口术依赖和护理的日常生活复杂性。

IF 2.1 4区 医学 Q1 REHABILITATION Disability and Rehabilitation Pub Date : 2024-11-18 DOI:10.1080/09638288.2024.2428372
Ellinor Rydhamn Ledin, Linda Fasterius, Gunilla Björling, Andrea Eriksson, Janet Mattson
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引用次数: 0

摘要

目的:随着长期气管造口术技术依赖儿童群体的不断扩大,我们旨在探究父母与长期气管造口术依赖儿童的日常生活经验:我们对四名儿童的六位家长进行了访谈,并采用乔吉的描述性现象学对访谈记录进行了分析:结果:日常生活、亲子互动以及与外界互动的各个方面都受到了技术依赖的影响。父母扮演着积极的角色,他们既是外界与孩子之间的保护屏障,也是帮助孩子与外界互动的桥梁。在互动和日常生活的各个方面、各个层面和各个方向,都交织着父母积极和参与的角色。他们的生活经历可以用四个主题来描述:技术带来的谨慎和风险意识、满足技术依赖的需求、技术依赖带来的压力和约束以及对技术依赖的矛盾感受:结论:长期气管切开术和技术依赖影响并塑造了日常生活。这项研究的实际意义表明,需要重新设计并与所有相关方共同设计,以支持父母的福祉、应对这一日益增长的人群及其父母的需求并提高患者安全。
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Technological lifelines: the everyday lived complexities of dependence and care of pediatric long-term tracheostomy.

Purpose: As the group of technology-dependent children with long-term tracheostomy continues to expand, we aimed to explore parents' lived experience of everyday life with a child dependent on long-term tracheostomy.

Materials and methods: Six parents of four children were interviewed and the transcripts analyzed using Giorgi's descriptive phenomenology.

Results: All aspects of everyday life, parent-child interaction, and interaction with the surrounding outside world were affected by technology dependency. Parents played an active role by acting both as a protective shield between the outside world and the child and as an enabling bridge to help the child interact with the outside world. The active and involved role of parents is interwoven in all aspects, levels, and directions of interaction and everyday life. The lived experiences can be described in four themes: caution and risk awareness due to technology, meeting the demands of technology dependence, strained and constrained by technology dependence, and conflicted feelings about technology dependence.

Conclusions: Long-term tracheostomy and technology-dependency affect and shape everyday life. Practical implications from the study suggest that re-design and co-design between all stakeholders involved are needed to support parental well-being, coping and enhance patient safety for this growing population and their parents.

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来源期刊
Disability and Rehabilitation
Disability and Rehabilitation 医学-康复医学
CiteScore
5.00
自引率
9.10%
发文量
415
审稿时长
3-6 weeks
期刊介绍: Disability and Rehabilitation along with Disability and Rehabilitation: Assistive Technology are international multidisciplinary journals which seek to encourage a better understanding of all aspects of disability and to promote rehabilitation science, practice and policy aspects of the rehabilitation process.
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