Burden of care and health literacy–understanding the support needs of caregivers for stroke patients

Each year, 12,000 people in Denmark are affected by stroke and require daily support from family caregivers that is essential to the quality of their care. In addition to carrying the burden of a complex workload, caregivers often experience symptoms such as fatigue, psychological challenges, and lack of social support. They are at risk for anxiety, depression and other health issues.
However, it is not yet clear how best to provide support that is meaningful to caregivers, addressing their needs and helping them provide better care for patients. Higher levels of health literacy—the personal characteristics and social resources that enable people to access, understand, appraise, and apply health-related information to improve care and services—are associated with more active participation in medical encounters and decision-making processes. Conversely, lower levels of health literacy are associated with increased caregiver burden and poorer self-management by patients.
This project, entitled “Caregivers burden and health literacy—identifying support needs”, combines qualitative and quantitative methods to understand caregiver needs and potential opportunities for nurses to provide better support for caregivers of patients who have had a stroke. It brings the caregiver perspective to the forefront, illuminating the burden they face, the type of needs they help the patient with, and how they experience support offered by healthcare professionals, Understanding varying levels of health literacy among caregivers helps illuminate their needs for support. The project contributes suggestions for person-centered clinical interventions to help caregivers.

Caregivers for patients who have had a stroke find themselves suddenly needing to provide substantial daily assistance with a range of tasks, which puts them at risk for anxiety, depression, and their own health issues. The more caregivers can find, understand, evaluate, and use information and services to participate in health-related decisions, the higher their health literacy and the better they fare. This project, entitled “Caregivers burden and health literacy-identifying support needs” brings the caregiver perspective to the forefront, illuminating the burden they face, the type of needs they help the patient with, and how they experience support offered by nurses and other healthcare professionals. Understanding varying levels of health literacy among caregivers reveals their needs for support. The project contributes suggestions for person-centered clinical nursing interventions to help caregivers.