Family caregivers are instrumental in the care of people with chronic and disabling conditions. Family caregivers provide hands-on personal care, perform health management activities, and navigate health system demands. The availability and adequacy of support provided by family caregivers has important consequences for patients’ health and quality of life, the services they use, and the quality and costs of care they receive. However, family caregivers are not systematically identified in care delivery, and providers do not typically assess whether they have the requisite knowledge, understanding, or proficiency in the tasks they are expected to perform. Family caregivers describe learning how by trial and error — and being fearful of making a mistake that will cause harm. A recent National Academies of Sciences, Engineering, and Medicine (NASEM) report found that current medical practice often compounds family caregivers’ problems by failing to include them in treatment decisions and care planning while assuming that they are willing and able to carry out the plan of care.
Recent endeavors to promote high-value, safe, and efficient care afford new opportunities to rationalize and better support family caregivers in delivery processes. Diffusion of the health information technology raises the possibility of a more systematic capture of core information about family caregivers in the electronic health record. Availability of shared access to the provider-sponsored patient portal and other consumer-oriented health information technologies provides a mechanism for families and friends to interact with the health system on behalf of patients using their own identity credentials. The passage of the CARE Act in more than 30 states is motivating efforts to proactively ensure that family caregivers of hospitalized patients are afforded instruction pertaining to the post-hospital discharge plan of care. By participating in the Engaging Family Caregivers in Care Delivery Expedition, participants will learn about foundational principles in the support of family caregivers as well as approaches that are being successfully deployed by forward thinking, integrated health systems, and care delivery organizations.
This IHI Virtual Expedition is approved for a maximum of 5.5 continuing education credits for physicians and pharmacists.