Department of Occupational Sciences and Occupational Therapy, University of British Columbia, Vancouver, Canada.
GF Strong Rehabilitation Centre, Vancouver, Canada.
Disabil Rehabil. 2024 Feb;46(3):546-555. doi: 10.1080/09638288.2023.2171495. Epub 2023 Feb 5.
To identify the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate and to explore and discuss potential supports, services, and programs that would best assist them in the community.
In this qualitative descriptive study, interviews were the primary means of data collection. These were supplemented with descriptive standardized measures of function and life satisfaction. Qualitative data were analyzed thematically.
Twenty-four participants were interviewed, their average age was 55 years and 46% were female. We identified three themes: 'I really couldn't go there', described the physical and social barriers experienced by participants, 'It'd be really nice to let the public know there are people out there like me' expressed the desire for greater social understanding of incomplete spinal cord injury, and 'I just don't quit', displayed the perseverance that participants demonstrated following their injury.
Findings indicate service providers to improve the inclusion of ambulatory individuals with incomplete spinal cord injury in their programs. Suggestions include designing programs (community, healthcare, return to work, peer support), environments using the principles of universal design for people with incomplete spinal cord injury who ambulate, and increasing consideration of their perspectives.Implication for rehabilitation:People with incomplete spinal cord injury who can ambulate live with invisible impairments, which are often not acknowledged by family, friends, health professionals, and people with complete spinal cord injuryThey may feel excluded from activities (organized by spinal cord injury associations) that were originally designed for people with complete spinal cord injuryGreater awareness among health professionals, friends, family, and people with complete spinal cord injury of the needs of people with incomplete spinal cord injury who can ambulate is needed to increase their inclusion.
确定能够行走的不完全性脊髓损伤患者的经历、需求和优势，并探讨和讨论可能为他们提供的最佳支持、服务和计划，以帮助他们在社区中更好地生活。
在这项定性描述性研究中，访谈是收集数据的主要手段。此外，还使用了功能和生活满意度的描述性标准化测量方法。对定性数据进行了主题分析。
对 24 名参与者进行了访谈，他们的平均年龄为 55 岁，其中 46%为女性。我们确定了三个主题：“我真的去不了那里”，描述了参与者所经历的身体和社会障碍；“让公众了解像我这样的人在那里”，表达了对不完全性脊髓损伤的社会理解的渴望；“我就是不放弃”，展示了参与者在受伤后的毅力。
研究结果表明，服务提供者应改善对可行走的不完全性脊髓损伤患者的服务，包括设计针对可行走的不完全性脊髓损伤患者的社区、医疗保健、重返工作岗位和同伴支持计划，利用通用设计原则设计环境，以及增加对他们观点的考虑。
能够行走的不完全性脊髓损伤患者存在无形的障碍，这些障碍往往不被家人、朋友、健康专业人员和完全性脊髓损伤患者所认识。他们可能会感到被排斥在最初为完全性脊髓损伤患者设计的活动之外。需要提高健康专业人员、朋友、家人和完全性脊髓损伤患者对能够行走的不完全性脊髓损伤患者的需求的认识，以增加他们的包容度。
