Table 2.
Examples of Topics That Should Be Considered for the Priority Research Agenda
| The impact and feasibility of sustaining interventions over time.3 |
| Circumstances where multiple caregivers are involved (given that many families share responsibilities) and explore feasible means of support in these scenarios.3 |
| Determining when to use dyadic interventions rather than caregiver(s) only. |
| Involvement of more diverse caregiver populations and vulnerable populations including (but not limited to) caregivers for Hispanic, African American, Native American, and other ethnic and racial groups; long-distance caregivers; and HIV/AIDs caregivers, LGBTQ caregivers, and caregivers for people with substance abuse.3 |
| Exploration of the financial, health, and social services utilization impact of family caregiver interventions.3 |
| Fostering family caregiver research in the community through extending and supporting practice-based research networks.1 |
| Health care and social services workforce capacity issues (status and future forecasting) related to family caregiver support. |
| Compare and contrast the needs and experiences of family caregivers of people with serious illness who do and do not receive hospice social services. |
| Bereavement research including descriptions of issues, tools for assessment, and effective interventions. |
| Assess the bereavement services available to family caregivers of patients who were not enrolled in hospice. |
| Study family caregivers of patients with different diseases to compare and contrast needs. |
| Preventive interventions to foster the psychological well-being of family caregivers, including optimal ways for discerning caregivers “at risk.” |
| How patient/family caregiver dynamics impact upon clinical decisions made by doctors and nurses. |
| Development and testing of brief interventions targeting family caregivers that can be readily delivered in the practice setting and an associated triage system that links caregivers to various types of programs (high or low intensity) depending on their caregiver needs. |
| Potential benefits, utility, and resources required to establish a National Family Caregiver call center (phone and online) to support family caregivers of people with serious illness who need urgent advice (this process should incorporate a review of any existing services of this type). |
| Foster self-management and caregiver problem solving. |
| Conduct more prospective studies that clearly delineate the transition from disease management to supportive care to end-of-life care to better understand the caregiving trajectory and how these transitions affect the caregiver and formal care provided to the care recipient.3 |
| Determine the core information that should be offered to all family caregivers about the common elements of the role and develop evidence-based processes for tailoring additional information according to need. |
| Ascertain specific types of respite that offer the best outcomes for caregivers, patients, and the health care and social services system. |
| Promote research investment and collaboration from federal and state agencies to explore the feasibility and impact of any changes to policy and financial aid options for caregivers.3 |
| Determine the barriers and enablers to the uptake of web/e-health-based interventions. |