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

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.

Stroke is a leading cause of death and disability in Malaysia. Most stroke survivors experience multiple disabilities and are functionally dependent when they are discharged from the hospital. Physical therapy and help with mobility and daily activities (e.g. feeding, bathing and dressing) is generally provided by family members (caregivers) who are supported by community rehabilitation services in high-income countries. However, in the absence of community rehabilitation services, caregivers take on most of the patient care responsibilities in Malaysia. They are untrained and unprepared for this role, which impacts negatively on outcomes for stroke patients and the physical, emotional, social and financial health of the caregivers. Informed by our previous work in India, and the planned contextual analysis in Malaysia, we will develop a culturally tailored intervention (in-person training coupled with sustained support through a mobile phone application) to improve caregivers' skills in managing the physical and psychological needs of stroke patients and their own needs. We will assess the feasibility and acceptability of the intervention and undertake a stakeholder analysis to establish the need for further evaluation or implementation in the Malaysian healthcare system. The social and economic cost of stroke disability to Malaysia is tremendous, as stroke sufferers and their caregivers are typically of working age. Our intervention to support stroke caregivers could yield health and developmental dividends for Malaysia and reduce disparities.

The proposed research has the potential for a range of direct and indirect impacts on the Malaysian society.
Potential impact 1: Health and quality of life for post stroke patients
Caregiving is a continual and challenging process especially in stroke especially in Malaysia, a high-middle income country. This is because in Malaysia, a significant proportion of stroke survivors suffer from residuals physical, psychological and cognitive complications. Stroke educational intervention via smartphone apps for caregiver is the best supplementary approach to direct care of the stroke patients. The intervention delivered through the use of smartphone is simple, motivating and engaging to the caregivers and stroke survivors. It will promote better patient engagement and subsequently improve post stroke rehabilitation clinical outcomes.
Potential impact 2: Science and technology
We will use several innovative technologies in the proposed research to develop the smartphone-enabled, caregiver-supported educational intervention for the management of physical disabilities after stroke. So far, the use of such technologies in humans has been limited to small samples in high-resource settings. A large-scale project will provide Malaysian scientific community with experience and skill to develop smartphone apps that is valid, reliable, culturally appropriate and effectively in the post-stroke intervention. With such experience and skill transferred during the collaborative work, it opens up more opportunity to Malaysians to develop smart apps. This is a bright opportunity because Malaysia has one of the highest smartphone penetration and a wide internet coverage.
Potential impact 3: Industry
The development of smartphone apps for the intervention of stroke will promote the use of the medical and health-related apps in the IT industry in Malaysia. Because the smartphone apps is a software, it is easy to distribute using the Android Play or Apple Store. Such potential will draw great interest from the IT communities in Malaysia. This is the opportunity because despite the potential, talents and infrastructure of IT resources in Malaysia, the development of smartphone apps to cater for needs of patients and caregivers is really lacking in Malaysia. The documented processes and the publications stemmed from this project will guide the smartapps developers in Malaysia and other countries to develop much more effective smartphone apps in the future.
Potential impact 4: Governmental policies
Malaysia Ministry of Health is also an avid supporter of Digital Healthcare. Recently, the Director General of Health, Malaysia has stressed the importance of going digital when delivering healthcare services. The ministry is supportive of innovative use of technology and is committed to apply digital healthcare as much as possible. Indeed, this proposal is in-line with the Digital Healthcare initiative by the Ministry of Health. The ministry of health can roll the educational intervention as part of the standard care for stroke patients
Potential impact 5: Economic productivity and inequalities
The cost of medical and surgical treatment and follow-up care due to stroke are known to push many low-income households in Malaysia into excessive expenses, further increasing social inequalities. The use of smartphone app reduces the caregivers and patient's dependence on the frequent visit to the hospital for rehabilitation which reduces the inequalities. It also minimizes the time spent by the healthcare workers during the domiciliary care visit to the patient's house, fastens the clinical recovery and provide the holistic rehabilitation which at the end contribute to better economic productivity.