Understanding the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate

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. 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 injury They may feel excluded from activities (organized by spinal cord injury associations) that were originally designed for people with complete spinal cord injury Greater 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.

本研究旨在识别能够行走的不完全性脊髓损伤（incomplete spinal cord injury）人群的体验、需求与优势，并探讨最能助力其融入社区的潜在支持方案、服务项目与帮扶计划。本研究为质性描述性研究，以访谈作为主要数据收集手段，辅以针对功能与生活满意度的标准化描述性测量工具。质性数据采用主题分析法开展分析。本研究共纳入24名参与者，平均年龄为55岁，女性占比46%。研究共提炼出三大核心主题：其一为“我实在无法涉足那些地方”，阐述了参与者所遭遇的躯体与社交双重障碍；其二为“若能让公众知晓世上还有我这样的人，那真是太好了”，传递了大众对该群体加深社会理解的迫切诉求；其三为“我绝不会轻言放弃”，展现了参与者在脊髓损伤后所秉持的坚韧毅力。研究结果表明，服务机构应优化项目设计，将能够行走的不完全性脊髓损伤人群纳入服务覆盖范畴。具体建议包括：针对该群体设计涵盖社区、医疗、复工、同伴支持等领域的项目；依据通用设计（universal design）原则优化相关环境；同时更充分地考量该人群的真实诉求与视角。康复领域启示：能够行走的不完全性脊髓损伤人群伴随隐匿性功能障碍，此类障碍往往未得到家属、朋友、医疗从业者以及完全性脊髓损伤人群的认知与认可。他们可能会被排除在脊髓损伤协会原本为完全性脊髓损伤人群举办的各类活动之外。因此，亟需提升医疗从业者、家属、朋友以及完全性脊髓损伤人群对能够行走的不完全性脊髓损伤人群需求的认知水平，以切实增进该群体的社会融入度。