Family Caregiver and Provider Perspectives on Inclusive Care: Aligning Needs and Expectations.

Journal Article (Journal Article)

BACKGROUND: Home-based and community-based health care for individuals with complex medical conditions is often provided by family caregivers. Yet caregivers often are not meaningfully included in interactions with clinical health care teams. Inclusive care means inviting the caregiver to participate in shared decision-making and treatment planning. For aging or medically vulnerable adults, caregiver inclusion is an important facet of patient-centered care. METHODS: We apply a mixed-methods approach using a survey (n=50) and semistructured interview data (n=13) from a national sample of caregivers of veterans and semistructured interview data from (n=24) providers from 3 Veterans Affairs regional networks. We elicited data from caregivers about their experiences with inclusive care and how providers communicate with them and assess their capacity. We juxtaposed these data with provider perspectives to see where there was alignment. FINDINGS: We determined that caregivers play important roles in trust-building, communications management, implementation of care plans at home or in the community, and improving the care of care recipients-while maintaining a balance between competing tensions. CONCLUSIONS: Our findings suggest that expanding inclusive care could improve care quality and health outcomes of individuals with complex health care needs. Further, our findings bolster recent policy efforts at the federal and state levels to increase recognition of caregivers as key members of the health care team.

Full Text

Duke Authors

Cited Authors

  • Shepherd-Banigan, ME; Boucher, NA; McKenna, K; Delgado, RE; Whitaker, C; Christensen, L; Sperber, NR

Published Date

  • November 1, 2021

Published In

Volume / Issue

  • 59 / 11

Start / End Page

  • 961 - 969

PubMed ID

  • 34348392

Electronic International Standard Serial Number (EISSN)

  • 1537-1948

Digital Object Identifier (DOI)

  • 10.1097/MLR.0000000000001622


  • eng

Conference Location

  • United States