Including Family Caregivers In Seriously Ill Veterans' Care: A Mixed-Methods Study

Family caregivers often serve as unpaid members of the home and community-based care workforce for people with serious illness; as key partners in the home-clinic continuum, they should be included in health care teams. The Campaign for Inclusive Care is an initiative within the Veterans Affairs health care system to improve provider practices for including caregivers of military members in treatment planning and decisions. We defined inclusive care using a literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of the caregiver role, system policies for inclusion, assessment of caregivers' capacity, explicit involvement of caregivers, and mutuality in caregiver-provider communication. We recommend solutions based on this definition that can inform development of a national caregiver strategy, required of the Department of Health and Human Services by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018.