Abstract：
BACKGROUND: Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers\' interests and needs over time.
OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit.
METHODS: Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis.
RESULTS: Participants recommended that a digital toolkit should include content focused on promoting MS caregivers\' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers\' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients\' and caregivers\' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users\' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage.
CONCLUSIONS: These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.
OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit.
METHODS: Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis.
RESULTS: Participants recommended that a digital toolkit should include content focused on promoting MS caregivers\' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers\' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients\' and caregivers\' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users\' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage.
CONCLUSIONS: These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.
摘要：
背景：对于支持多发性硬化症（MS）护理人员的积极护理经验，迫切需要增强恢复力的资源。数字工具包提供了一种灵活的方式来访问和使用基于证据的资源，这些资源随着时间的推移与MS护理人员的兴趣和需求保持一致。
目标：我们探讨了关键知识用户对内容领域的看法，特点,以及其他注意事项，以告知MS护理人员弹性数字工具包。
方法：作为本研究的一部分，22个人完成了人口统计学调查：11名MS家庭照顾者，为MS和/或护理人员提供支持服务的组织的7名代表，4名临床医生。我们进行了九次半结构化个人访谈和两个焦点小组。使用内容分析对数据进行分析。
结果：参与者建议数字工具包应包括专注于促进MS护理人员对疾病的理解的内容，它的轨迹和可用的管理选项，并提高护理技能和护理人员启动和维持行为以促进自身福祉的能力。允许跟踪和记录护理接受者和护理人员经历的功能，定制的参与，并建议与其他支持来源连接。与会者建议，应通过具有可在智能手机上访问的Web浏览器功能的应用程序交付数字工具包，片剂,或笔记本电脑。他们还承认需要考虑用户以前的技术体验以及与可访问性相关的问题，可用性，隐私和安全可能会影响工具包的使用。
结论：这些发现将指导未来的工具包开发和评估。更广泛地说,这项研究加入了声音的合唱，呼吁对MS家庭照顾者的福祉给予高度关注。
目标：我们探讨了关键知识用户对内容领域的看法，特点,以及其他注意事项，以告知MS护理人员弹性数字工具包。
方法：作为本研究的一部分，22个人完成了人口统计学调查：11名MS家庭照顾者，为MS和/或护理人员提供支持服务的组织的7名代表，4名临床医生。我们进行了九次半结构化个人访谈和两个焦点小组。使用内容分析对数据进行分析。
结果：参与者建议数字工具包应包括专注于促进MS护理人员对疾病的理解的内容，它的轨迹和可用的管理选项，并提高护理技能和护理人员启动和维持行为以促进自身福祉的能力。允许跟踪和记录护理接受者和护理人员经历的功能，定制的参与，并建议与其他支持来源连接。与会者建议，应通过具有可在智能手机上访问的Web浏览器功能的应用程序交付数字工具包，片剂,或笔记本电脑。他们还承认需要考虑用户以前的技术体验以及与可访问性相关的问题，可用性，隐私和安全可能会影响工具包的使用。
结论：这些发现将指导未来的工具包开发和评估。更广泛地说,这项研究加入了声音的合唱，呼吁对MS家庭照顾者的福祉给予高度关注。
