Information, Involvement, Self-care and Support - The Needs of Caregivers of People with Stroke: A Grounded Theory Approach

Background: Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to support them in their caregiving journey better and improve the quality of care delivered. Methods: The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. Results: The study identified four core categories of needs, i.e., information, involvement, self-care and support that need to be delivered at appropriate times to ensure the caregivers feel prepared to assume their role of care and are supported throughout the care trajectory. Conclusions: There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in recovery. Moreover, through the inclusion of caregivers in the recovery process, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout recovery.