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Research Questions

  1. What barriers do family caregivers face in collaborating with their loved ones' health care team?
  2. What are the potential ways to mitigate these barriers?
  3. What steps should be taken to implement solutions that address these barriers?

There are about 53 million family and friends providing care and assistance to loved ones in the United States. Although family caregivers provide a significant portion of health and support services to individuals with serious illnesses, they are often overlooked by U.S. health care systems. Fundamental changes are needed in the way we identify, assess, and support family caregivers. Recent changes in the U.S. health care system and payment models have increased the opportunities to integrate family caregivers into care teams.

The authors reviewed the literature on the role of family caregivers in the coordination of care and conducted key informant interviews with 13 experts from diverse stakeholder groups to better understand the barriers to integrating family caregivers into the patient's health care team and identify ways to mitigate these barriers. The authors identify promising policy directions and provide recommendations for next steps in assessing, developing, and implementing policies to improve the integration of family caregivers into care teams.

Family caregivers have direct access to loved ones with caregiving needs. These regular interactions allow family caregivers to monitor health changes on a more-regular basis than would be possible for formal health care providers. Including family members in care collaboration improves patients' access to services and reduces patients' unmet needs. Despite these benefits, caregivers are often treated as secondary members of the care team. Although the role of family caregivers is gaining more recognition, integrating them as partners in the care team is not standard protocol currently.

Key Findings

Barriers to integration were grouped around four primary themes

  • The four themes were (1) identifying caregivers; (2) communication and information-sharing; (3) time limitations and competing demands; and (4) trust and cultural barriers.

The authors also identified six policy areas in which initiatives could mitigate these barriers

  • The six policy areas were (1) identify and record information on family caregivers; (2) incentivize providers to engage with family caregivers; (3) invest in programs that provide supportive services for family caregivers; (4) expand access to and funding for care coordinators to support caregivers and connect them to clinical information; (5) implement training programs for providers and caregivers to facilitate effective communication; (6) develop, test, and improve caregiver access to technologies that foster caregiver-provider care integration and information-sharing.
  • Case studies highlighted organizations that have begun to implement some of the solutions identified within each policy area.

Future work is needed to expand and assess the initiatives identified in the six policy areas

  • There are many potential ways to improve the integration of family caregivers into the health care team.
  • Before solutions can be implemented, additional work is needed to provide evidence-based research on the viability of potential approaches.

Recommendations

  • Conduct a systematic review of programs intended to improve the integration of family caregivers into the health care team. This is needed to identify the programs that produce successful outcomes and determine which are cost-feasible for government agencies, employers, or payers to implement.
  • Expand the current study and include stakeholder consensus-building methods to assess facilitators on a variety of metrics and identify a comprehensive list of action items for policy implementation.
  • Conduct cost-effectiveness analysis to determine which solutions provide the largest benefits relative to costs.
  • Conduct pilot tests of potential interventions to collect data regarding the effectiveness of programs.

Research conducted by

This research was funded by Seniorlink and a gift from Steve Metzger, a member of the RAND Health Advisory Board, and was carried out within the Access and Delivery Program in RAND Health Care.

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