RAISE National Strategy to Support Caregivers: Caregiving Collaboratory’s Public Comments

As researchers, we are focused on Goal 5: Expand data, research, and evidence-based practices to support family caregivers.

We are writing as faculty and students in the Gillings School of Global Public Health at University of North Carolina, Chapel Hill, and members of the Caregiving Collaboratory. We study caregiving challenges and ways to address them, through healthcare delivery interventions and policy solutions. As researchers, one of the biggest challenges we have in studying caregiving is the lack of valid and reliable data.

Overall, the national infrastructure supporting research on caregiving needs to be strengthened. One way to do to this would be to create an Office of Caregiving Research within the NIH that coordinates research on caregiving, similar to the Office of Research on Women’s Health or the Sexual and Gender Minority Research Office. This office could conduct some of the following activities: (1) convene research experts, advocates, and caregivers to create common data elements about caregiving, including definitions of caregivers, caregiving burden and strain, positive aspects of caregiving, and disease-specific and context-specific aspects of caregiving; (2) coordinate national surveys that have caregiving questions or modules; (3) in partnership with other institutes and centers at NIH, CDC, AHRQ,  and at NIDILRR, develop funding opportunity announcements that target studying and supporting caregivers.

We need:

• More caregiving screening questions in national surveys, to include BRFSS but also NHIS, NHANES, MEPS, ATUS, PSID, and other datasets. We also need the ability to flag and follow caregivers in data linked to labor market participation and healthcare claims.
• The caregiving module to be required in the BRFSS core, however, which would ensure that all states monitor caregivers each year and then could provide better national and state level prevalence data.
• More data is needed to address the needs of diverse populations, including those that are intersectional (for example, individuals from minoritized groups who also identify as LGBTQ+). We need more data, and without a lot of data researchers are limited from analyzing caregiving patterns in smaller groups, for example caregivers living in rural areas.
• Standardized caregiving questions in these national surveys, sometimes referred to as ‘common data elements,’ so we can compare across assessments. This is done for other standardized demographic characteristics like race, ethnicity, marital status, and more recently gender identity and sexual orientation.
• More widely accessible tools for disseminating information about evidence-based interventions for caregivers, those that have demonstrated efficacy, for example, the NIH PhenX toolkit.
• Studies of different models of caregiver supports through pragmatic trials aimed at providing different forms of caregiver supports.

As population demographics and patterns continue to change, we need to expand beyond the traditional focus on heterosexual couples-based caregiving interventions to family- and friend-based caregiver systems. We need to work with other countries to create an international consortium of caregiving research, to learn from one another how best to support caregivers. We would be eager to join any future efforts to strengthen and expand recommendations under Goal 5.

Posted as a public comment to the Administration for Community Living RAISE public comment site on 11/26/2022.