A scalable solution for supporting informal stroke caregivers in Malaysia: systematic development and feasibility study

中风是一种严重的医学疾病，当大脑的部分血液供应被切断时就会发生。中风幸存者往往由于脑损伤而无法使用身体的某些部位。因此，他们可能无法四处走动或自己完成日常任务（如喂食、洗澡和穿衣）。他们可能还需要物理治疗来帮助他们恢复。这种物理治疗和日常活动的帮助通常由家庭成员和朋友（也称为照顾者）提供，他们从西方国家的社会和社区康复服务中获得帮助和指导。在马来西亚，这种支持是不可用的，因此护理人员必须承担大部分的病人护理责任，他们没有受过培训或准备。因此，中风患者的恢复不那么好，护理人员自己可能会感到不知所措，他们的健康和经济状况可能会受到影响。在印度，情况与马来西亚类似，我们之前制定了一个培训计划，以支持使用手机的中风护理人员。利用这项研究的经验教训，并深入评估马来西亚中风护理人员的当地知识、技能、资源和文化信仰，我们将制定一个培训计划，以提高护理人员在管理中风幸存者的身心需求和他们自己的需求方面的技能。最初的培训将亲自进行，并通过移动电话应用程序提供进一步的支持，该应用程序将包括关键技能的视频、可搜索的当地中风服务地图，以及通过短信或电话获得专家建议。然后，我们将为新的护理人员提供培训和移动应用程序，以了解他们是否觉得有用，以及如何改进。我们还将与卫生政策制定者合作，探讨如何将我们的培训和支持方案纳入马来西亚卫生保健系统。中风是马来西亚死亡和残疾的主要原因之一，给经济造成巨大痛苦和损失。我们的培训计划也许能够减少这两种情况。

Stroke is a serious medical condition that occurs when the blood supply to part of the brain is cut off. People who survive stroke are often unable to use parts of their body due to brain injury. As a result of this, they may not be able to move around or carry out daily tasks (such as feeding, bathing and dressing) on their own. They may also need physical therapy to help them with the recovery. Such physical therapy and help with daily activities is generally provided by family members and friends (also called caregivers) who receive help and guidance from social and community rehabilitation services in western countries. In Malaysia, such support is not available, therefore the caregivers have to take on most of the patient care responsibilities, for which they are not trained or prepared. As a result of this, the recovery of stroke patient is not as good and the caregiver themselves may feel overwhelmed and their health and finances may suffer. In India, where the situation is similar to Malaysia, we have previously developed a training programme to support stroke caregivers using mobile phones. Using lessons from this research and an in-depth assessment of local knowledge, skills, resources and cultural beliefs of stroke caregivers in Malaysia, we will develop a training programme to improve caregivers' skills in managing physical and psychological needs of stroke survivors and their own needs. Initial training will be delivered in person, with further support provided through a mobile phone application that will include videos of key skills, a searchable map of local stroke services and access to expert advice through text messaging or phone call. We will then offer the training and mobile application to new caregivers to find out whether they find it helpful and how it can be improved. We will also work with health policy makers to explore how our training and support programme could be integrated within the Malaysian healthcare system. Stroke is one of the leading causes of death and disability in Malaysia, which causes enormous suffering and loss to the economy. Our training programme may be able to reduce both of these.