Verdonck Michele, Nolan Maeve, Chard Gill
a Discipline of Occupational Therapy, School of Health and Sport Science , University of the Sunshine Coast , Maroochydore , Australia.
b Carnegie-Wits Alumni Diaspora Fellow , University of the Witwatersrand , Johannesburg , South Africa.
Disabil Rehabil Assist Technol. 2018 Nov;13(8):785-790. doi: 10.1080/17483107.2017.1378392. Epub 2017 Sep 22.
Assistive technologies have deep and personal meanings for people with disabilities. This study sought to provide an in-depth exploration of the subjective meaning of Environmental Control System (ECS) use for people with high cervical spinal cord injury.
Interpretative Phenomenological Analysis (IPA) was used to explore the personal meaning of ECS. In-depth interviews with five participants were analyzed according to recommended IPA guidelines to produce a rich phenomenological account of lived experience.
This study identified two overarching themes, one of which was the subject of an earlier publication. This paper focuses on the second theme "taking back a little of what you have lost" and its two main components "reclaiming a little doing" and "feeling enabled". Doing everyday things, being less dependent on others and feeling safer and less needy all contributed to participants experience of regaining something important of what had been lost.
A nuanced range of meanings, demonstrating how "a little can mean a lot" emerged from this study. For those with high cervical spinal cord injury, "reclaiming a little doing" resulted in subtle, but subjectively significant, improvements in identity, relationships and well-being, while "feeling enabled" was both enjoyable and empowering and led to an increased sense of safety and reduced neediness. The potentially powerful impact on individuals with life-altering injuries of reclaiming a little of what they had lost, supports the value of more widespread access to and provision of ECS. Implications for rehabilitation While ECS use produces only a "little" objective change in activity levels, it subjectively means "a lot" to people with high level injuries. ECS enable people to "do" everyday things as well help in supporting them to "feel" less dependent and needy. Using ECS facilitates much more than functional tasks and a sense of security. It helps promote positive self-perception and continuity of being. It is important for those with high cervical spinal cord injuries to have access to ECS to ensure they can enjoy both psychological and physical benefits.
辅助技术对残疾人具有深刻而个人化的意义。本研究旨在深入探究环境控制系统（ECS）对高位颈脊髓损伤患者使用的主观意义。
采用解释现象学分析（IPA）来探究ECS的个人意义。根据推荐的IPA指南，对五名参与者进行了深入访谈，以对生活经历进行丰富的现象学描述。
本研究确定了两个总体主题，其中一个是早期出版物的主题。本文重点关注第二个主题“找回一些失去的东西”及其两个主要组成部分“重新获得一点行动力”和“感觉有能力”。做日常事务、减少对他人的依赖以及感觉更安全和需求更少，都促成了参与者重新获得一些已失去的重要东西的体验。
本研究揭示了一系列细微差别明显的意义，表明“一点可以意味着很多”。对于高位颈脊髓损伤患者而言，“重新获得一点行动力”在身份认同、人际关系和幸福感方面带来了微妙但主观上显著的改善，而“感觉有能力”既令人愉悦又赋予力量，并导致安全感增强和需求感降低。找回一点他们失去的东西对改变生活的伤者可能产生强大影响，这支持了更广泛地获取和提供ECS的价值。对康复的启示虽然使用ECS在活动水平上仅产生“一点”客观变化，但对高位损伤患者而言，其主观意义“重大”。ECS使人们能够做日常事务，并有助于支持他们感觉不那么依赖他人和需求更少。使用ECS带来的远不止功能性任务和安全感。它有助于促进积极的自我认知和存在的连续性。对于高位颈脊髓损伤患者来说，能够使用ECS以确保他们能享受心理和身体上的益处非常重要。
