John Walsh Centre for Rehabilitation Research, Northern Sydney Local Health District, St Leonards, NSW Australia.
The Kolling Institute, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia.
Top Spinal Cord Inj Rehabil. 2024 Winter;30(1):59-73. doi: 10.46292/sci23-00042. Epub 2024 Feb 29.
There is a lack of consumer-friendly tools to empower and support people living with spinal cord injury (SCI) to self-manage complex health needs in community. This article describes the co-design process of the new SCI Health Maintenance Tool (SCI-HMT).
Co-design of the SCI-HMT using a mixed-methods approach included a rapid review, e-Delphi surveys with range of multidisciplinary health care professionals ( = 62), interviews of participants with SCI ( = 18) and general practitioners ( = 4), focus groups ( = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders ( = 11, 8), and end-user testing ( = 41).
The SCI-HMT (healthmaintenancetool.com) was developed based on participatory research with data synthesis from multiple sources. Five priority health maintenance issues for bladder, bowel, skin, pain, and autonomic dysreflexia were originally covered. Best practice recommendations, red flag conditions, referrals, and clinical pathways were agreed on through an e-Delphi technique. Qualitative analysis identified six broad key concepts for self-management, including early symptom recognition, role of SCI peers, knowledge sharing with primary care, general practitioners as gatekeepers, and shared decision-making and highlighted a need to place much stronger emphasis on mental health and well-being. Design workshops and end-user testing provided key insights about user experience, functionality, and content for the SCI-HMT.
The co-design process engaging end users, including people with SCI and general practitioners, enabled a shared understanding of the problem and identification of important needs and how to meet them. Informed by this process, the SCI-HMT is a freely accessible resource supporting SCI self-management, shared decision-making, and early problem identification.
目前缺乏方便消费者使用的工具，无法为社区中患有脊髓损伤 (SCI) 的患者提供支持，帮助他们管理复杂的健康需求。本文描述了新型 SCI 健康维护工具 (SCI-HMT) 的共同设计过程。
采用混合方法对 SCI-HMT 进行共同设计，包括快速审查、范围广泛的多学科医疗保健专业人员的电子德尔菲调查 (n = 62)、18 名 SCI 参与者和 4 名全科医生的访谈、3 个焦点小组（分别有 7、4 和 4 名 SCI 参与者）、利益相关者设计研讨会 (n = 11、8) 和最终用户测试 (n = 41)。
基于参与式研究和多源数据综合，开发了 SCI-HMT(healthmaintenancetool.com)。最初涵盖了膀胱、肠道、皮肤、疼痛和自主反射不良这五个优先健康维护问题。通过电子德尔菲技术达成了最佳实践建议、警示条件、转诊和临床路径。定性分析确定了自我管理的六个广泛关键概念，包括早期症状识别、SCI 同行的作用、与初级保健共享知识、全科医生作为守门人以及共同决策，并强调需要更加重视心理健康和幸福感。设计研讨会和最终用户测试提供了有关 SCI-HMT 用户体验、功能和内容的关键见解。
让包括 SCI 患者和全科医生在内的最终用户参与共同设计过程，使大家能够共同理解问题，并确定重要需求及其满足方式。在这一过程的指导下，SCI-HMT 是一个免费的资源，支持 SCI 自我管理、共同决策和早期问题识别。
