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作为一个为肢体差异儿童提供假肢的父母:一种解释性现象学分析。

Being the parent of a child with limb difference who has been provided with an artificial limb: an interpretative phenomenological analysis.

机构信息

Faculty of Health & Medicine, Lancaster University, Lancaster, United Kingdom.

出版信息

Disabil Rehabil. 2020 Jul;42(14):1979-1986. doi: 10.1080/09638288.2018.1543462. Epub 2019 Feb 2.

DOI:10.1080/09638288.2018.1543462
PMID:30712447
Abstract

Rehabilitative care for children with limb difference often includes the provision and use of an artificial (or prosthetic) limb. Of key influence in this process is how parents experience and respond to their child's limb difference and prosthesis use. However, research on this is lacking. Therefore, this study aimed to explore the experiences of parenting a child with limb difference who had been provided with an artificial limb. Semi-structured interviews took place with seven parents. Interview data was recorded, transcribed and analyzed using interpretative phenomenological analysis. The analysis identified four themes: (1) managing the initial emotional experience through the development of coping resources; (2) opportunities through prosthesis use and its relationship with "normality"; (3) managing and making sense of social reactions toward their child; (4) the intrinsic role of support: developing a collective connection and enabling shared knowledge. The study highlighted salient aspects to parents' experiences and sense-making that can inform clinical support. Emotional support, the management of social responses, and the holistic co-ordination of healthcare support with peer support networks are discussed. Healthcare professionals involved in the prosthetic rehabilitation process should look to explore these meanings to help support the management of the child's prosthesis use.Implications for rehabilitationUnderstanding the sense-making of parents is important in effective service provision for children with limb difference.Service provision for children with limb difference should consider the support needs of parents.Working with limb difference charities and voluntary organizations could help services develop needed parent-to-parent support networks.

摘要

肢体差异儿童的康复护理通常包括提供和使用假肢。在这个过程中,父母如何体验和应对孩子的肢体差异和假肢使用对孩子有很大的影响。然而,这方面的研究还很缺乏。因此,本研究旨在探讨为已配备假肢的肢体差异儿童提供养育的父母的经验。对 7 位家长进行了半结构化访谈。使用解释性现象学分析方法对访谈数据进行了记录、转录和分析。分析确定了四个主题:(1)通过应对资源的发展来管理最初的情绪体验;(2)通过假肢使用及其与“正常”的关系获得机会;(3)管理和理解社会对孩子的反应;(4)支持的内在作用:发展集体联系并实现知识共享。该研究强调了父母体验和意义构建的显著方面,这些方面可以为临床支持提供信息。讨论了情感支持、对社会反应的管理以及医疗保健支持与同伴支持网络的整体协调的整体协调。参与假肢康复过程的医疗保健专业人员应该探索这些意义,以帮助支持儿童假肢使用的管理。

康复的意义

了解父母的意义构建对于为肢体差异儿童提供有效的服务很重要。

为肢体差异儿童提供的服务应考虑父母的支持需求。

与肢体差异慈善机构和志愿组织合作可以帮助服务机构发展所需的家长对家长支持网络。

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