Improving Support for Family Caregivers of People with a Serious Illness in the United States: Strategic Agenda and Call to Action

Abstract

Background: An estimated 30% of the adult American population are caregivers and many of the people they support live with serious illnesses. Caregivers provide an average of 20 hours of services per week and are heavily involved in assisting with activities of daily living. This input represents considerable economic value to the health care system and to the well-being of communities. However, the impact of the burden on caregivers is considerable with negative outcomes on their physical, psychological, social, and financial well-being. The current landscape of caregiver policy in the United States is not well coordinated and does not meet the needs of this population. Objective: To develop a strategy to enhance the future of family caregiver support of people with serious illness within the United States. Methods: (1) Creation of project steering and key stakeholder groups; (2) survey and in-depth interviews with key stakeholders; (3) review of key family caregiver reports, systematic reviews, policies, and financial initiatives. Results: A strategy to provide clear direction to enhance the future of family caregiver support of people with serious illness within the United States was developed focusing explicitly on policy, research, training, service delivery, and public engagement. Conclusions: The strategy is an initial step aimed at enhancing support for family caregivers of people living with serious illness. It outlines key recommendations and a ?call to action.? Subsequent work will be needed on prioritization of tasks, gaining buy-in at all levels of the policy-making apparatus, operationalization, and implementation.

Keywords

• family caregivers
• palliative care
• policy
• serious illness