Amsters Delena, Duncan James, Field Victoria, Smales Alastair, Zillmann Leanne, Kendall Melissa, Kuipers Pim
a Spinal Outreach Team , Queensland Spinal Cord Injuries Service, Princess Alexandra Hospital , Brisbane , Australia.
b Spinal Cord Injury Opinion Leader Panel , Queensland Spinal Cord Injuries Service, Princess Alexandra Hospital , Brisbane , Australia.
Disabil Rehabil. 2018 Dec;40(25):3030-3040. doi: 10.1080/09638288.2017.1367425. Epub 2017 Aug 23.
To explore the perceived determinants of participation in life after spinal cord injury and incorporate these into a framework for the promotion of participation suitable for use by rehabilitation professionals.
Four people with spinal cord injury and one health service researcher engaged in a process of sharing narratives of life after spinal cord injury over a period of one year. The narratives were distilled using thematic analysis.
The relevant subset of data from the narratives categorized as This is what we think determines our participation in life was analyzed in depth to reveal nine themes (1) The world can be my friend or foe; (2) I am who I am; (3) It is a personal journey; (4) Some like to talk, others like to do; (5) We have the technology; (6) A support network is vital and it can be built; (7) Life involves tradeoffs; (8) Push; and (9) Be flexible. These themes were combined into a framework for the promotion of participation to be used by rehabilitation professionals. The collaboratively developed framework has three aspects - Help me, Encourage me and Accept.
The proposed participation promotion framework is grounded in the narratives of the research group but needs to be tested before it can be endorsed for practice. Implications for Rehabilitation In order to promote participation in life after spinal cord injury rehabilitation professionals can help people with spinal cord injury to negotiate the world, build and maintain a support crew and access equipment and technology. Spinal cord injury rehabilitation professionals can encourage people with spinal cord injury to push themselves, be assertive and be flexible, as these attributes can assist participation in life after spinal cord injury. In the pursuit of participation goals, rehabilitation professionals must accept the individuality of each person with spinal cord injury, respect that they may or may not be willing to make tradeoffs to achieve participation goals and that they are on an ever changing life journey.
探讨脊髓损伤后参与生活的感知决定因素，并将其纳入一个促进参与的框架，供康复专业人员使用。
四名脊髓损伤患者和一名卫生服务研究人员在一年的时间里参与了分享脊髓损伤后生活经历的过程。通过主题分析对这些经历进行提炼。
对归类为“这就是我们认为决定我们参与生活的因素”的经历中的相关数据子集进行了深入分析，揭示了九个主题：（1）世界可以是我的朋友或敌人；（2）我就是我；（3）这是一段个人旅程；（4）有些人喜欢交谈，有些人喜欢行动；（5）我们拥有技术；（6）支持网络至关重要且可以建立；（7）生活涉及权衡；（8）努力；（9）保持灵活。这些主题被整合到一个供康复专业人员使用的促进参与的框架中。共同开发的框架有三个方面——帮助我、鼓励我和接纳。
提议的促进参与框架基于研究小组的经历，但在被认可用于实践之前需要进行测试。对康复的启示为了促进脊髓损伤后参与生活，康复专业人员可以帮助脊髓损伤患者应对世界，建立和维持一个支持团队，并获取设备和技术。脊髓损伤康复专业人员可以鼓励脊髓损伤患者挑战自我、坚定自信并保持灵活，因为这些特质有助于脊髓损伤后参与生活。在追求参与目标的过程中，康复专业人员必须接受每个脊髓损伤患者的个性，尊重他们可能愿意或不愿意为实现参与目标而做出权衡，以及他们正处于不断变化的人生旅程中。
