Including Family Caregivers in Seriously Ill Veterans’ Care: A Mixed-Methods Study

Nina R. Sperber
Nathan A. Boucher
Roxana Delgado
Megan E. Shepherd-Banigan
Kevin McKenna
Madison Moore
Rachael Barrett
Margaret Kabat
Courtney H. Van Houtyen
Peer-Reviewed Article
June 2019

Family caregivers are a critical part of the home- and community-based workforce for people with serious illness. This is particularly the case for veterans, who are often sicker than the general population, with higher rates of chronic diseases such as cancer and diabetes. As such, recognizing the role of family caregivers and including them in the health care team can be an asset to both the patient and his or her providers. However, there is little consensus on a clear definition of a caregiver, a standard understanding of their role, and/or expectations for how a care team should interact with him or her.

This mixed study — drawn from a literature review, interviews with providers serving veterans, and a caregiver survey — sought to develop recommendations for how to better integrate family caregivers into the health care team. Resulting recommendations are as follows:

  • Health care leadership should make caregiver inclusion a system-wide priority, which should include a standard definition of a caregiver and include a caregiver assessment over the course of the patient’s care.
  • Health care professionals should: (1) invite caregivers’ participation; (2) ask the veterans’ preferences for caregivers’ involvement in their care; and (3) consider creating a facility-level caregiver support coordinator.
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