UC Davis Family Caregiving Institute — Research Priorities in Caregiving (2019)¶
Family Caregiving Institute, Betty Irene Moore School of Nursing at UC Davis. "Research Priorities in Caregiving: Advancing Family-Centered Care across the Trajectory of Serious Illness." 2019, from the March 2018 Research Priorities in Caregiving Summit. Funded by the Gordon and Betty Moore Foundation.
Key findings used in wiki¶
Why this document matters¶
- In March 2018, the Family Caregiving Institute convened more than 50 thought leaders — service agencies, funding organizations, academia — to identify and define the research priorities needed to advance the caregiving field.
- The summit produced an action agenda to improve the lives of the 40+ million Americans providing unpaid care at the time. That agenda is a blueprint for designing, implementing, and evaluating caregiving research.
- Four briefing papers grounded the discussion: Trajectory of Family Caregiving, Technology in Caregiving, Multicultural Caregiving, and Heterogeneity of Family Caregiving.
The ten caregiving research priorities¶
The summit identified ten priorities, many of which directly describe the design principles a caregiver-support product would need to address:
| # | Priority |
|---|---|
| A | Evaluate technologies that facilitate choice and shared decision-making |
| B | Determine where technology is best integrated across the trajectory of caregiving |
| C | Evaluate family-centered adaptive interventions across conditions, situations, stages, needs, preferences, and resources |
| D | Examine the heterogeneity of attitudes, values, and preferences toward caregiving, services, and supports |
| E | Evaluate family caregiver interventions in ways that address real-world complexity, translation, scalability, and sustainability |
| F | Develop a conceptual framework and typology of the trajectory of caregiving for novel interventions and outcomes |
| G | Conduct risk/needs assessment of the changing needs of family caregivers over the trajectory |
| H | Conduct implementation research on evidence-based caregiving programs for diverse populations |
| I | Develop outcome measures relevant to family caregivers from diverse social and cultural groups |
| J | Develop research methodologies that account for the complex structures of informal caregiving |
Explicit calls that line up with caregiver-support products¶
The document is unusual in how concretely it names what technology-enabled caregiver interventions should do:
- Technology across the trajectory: Caregivers' needs, preparedness, and capabilities change over the caregiving trajectory and vary by cultural context. Technology-enabled interventions should be adaptable to dynamic and changing needs, not static.
- Accessible and low-cost: Research should focus on interventions for caregivers who are under-resourced or under-represented — low-income, rural, non-Anglo, non-college-educated — rather than the narrow populations in most existing caregiver trials.
- Alternatives to RCT: The authors explicitly acknowledge that given the pace of technology innovation, pragmatic-trial and RCT-alternative methodologies are needed to evaluate caregiver technology interventions.
- Beyond single-disease, single-caregiver, cross-sectional Anglo college-educated samples: Most existing caregiver research is in that narrow population. The field needs interventions that work across illness condition and stage, culture, religion, gender, race/ethnicity, sexual orientation, family composition, setting, and socioeconomic status.
- Family-created goals and adaptive interventions: Static best practices developed in narrow populations are unlikely to transfer. Interventions should involve families in design, reflect caregiver strengths and preferences, and track changing needs over time.
Why it matters for the wiki¶
- Gives a public, citable, field-level statement of what caregiver-support research should look like — and many of those priorities (technology across the trajectory, adaptive interventions, diverse populations, risk/needs assessment over time, new outcome measures) are exactly what GiveCare is designed to do.
- Used as pre-validation anchoring: the federal-adjacent research agenda already called for this kind of product, which strengthens the value-proposition claim on
evidence/market-gap.mdand the feature arguments onproduct/mira.md,product/assessments.md, andproduct/score.md.