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

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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.