Harnessing Research to Improve the Lives of Family Caregivers

In 2019, the California Department of Health Care Services awarded California’s 11 non-profit Caregiver Resource Centers (CRCs) $30 million to expand and improve family caregiver services over three years. Over that time, the project has delivered benefits for family caregivers, their families and communities, as well as critical data and information to local and state agencies that promise to help improve the way that California’s family caregivers are served and supported.

In each year since the project’s launch, an evaluation team has published an evaluation report that provides major findings, highlights and insights. Evaluation report #4 has been released, and we checked in with Heather M. Young, PhD, RN, FAAN, Co-Principal Investigator of the project evaluation report with co-principal investigators Janice Bell, MN, MPH, PhD, FAAN and Jennifer Mongoven, MPH. A caregiving researcher for 30+ years, Heather shared her thoughts and insights about this most recent evaluation report. The interview has been condensed for clarity and length, and some audio highlights are in the embedded.

What are your top three takeaways from this evaluation?

Three things really stood out to our evaluation team. The first takeaway is that the CRCs are successfully reaching a substantial number of caregivers in California who are providing intense and very time-consuming care. They’re really reaching those who need them the most.

And it’s exciting to see that the deployment of CareNav™, which is an online platform the CRCs use to support these caregivers, is very well done across the state. Having a new resource in California that’s deployed statewide is incredibly exciting.

The second takeaway is that caregivers really value the support and array of services and assistance provided by the CRCs. These services are what they need when they need them, and they feel that the CRCs are very responsive. This makes a big difference in terms of their mental health and ability to continue providing care.

The third takeaway is that there are inequities in the distribution of caregiving demands, resources and outcomes. This is an important insight because California is so diverse. All these caregivers are, of course, experiencing time-consuming and very intense care, but there are some subtle differences which point to some directions for us to think about in terms of how we could enhance supports and fill some of those gaps.

The evaluation includes six major findings, several of which are new since previous year’s findings. Can you tell us more about these new findings?

Sure, but first, some context: In this and the previous two evaluations, our investigative team presents our Major Findings. Three of this year’s Findings — which center on complexity and intensity of care, the high value of CRC support to caregivers, and the continued advancement of CareNav — have been present over the last couple years. But this evaluation period revealed several new and exciting findings.

These new findings were revealed through in-depth interviews conducted with 28 caregivers from 10 of the CRC sites, where we had very deep conversations with them about their experiences, their reasons for turning to the CRCs, and what they received from them.

The first finding was about the crucial impact that direct contact with the CRCs had on caregivers’ lives. The fact that they were able to talk to someone, complete an assessment to understand their needs, and talk to a family consultant about what resources could help them and their family in their unique circumstance — this was huge. The kinds of help they needed ranged from education and respite care to support groups and consultation on legal and financial matters. The support they received boosted their confidence, skills and ability to continue caregiving. So, this really reinforces the importance of the CRCs as a system of care for caregivers.

This finding also shows that the CRCs are helping to mitigate the negative effects that might be occurring in very high-intensity caregiving situations by providing critical support and helping with problem-solving. In other words, the CRCs are demonstrably improving the lives and the quality of lives of people who are caring for others.

The second major finding is about the inequities that exist among caregivers. I touched on this briefly in the first question. Through our conversations, we were able to look deeply at the differences that exist by geography, racial ethnic groups, age and other differences among caregivers. We found that while all caregivers are very stressed in terms of the amount of time and intensity of care, there are important differences across groups.

For example, older caregivers compared to younger caregivers typically have greater caregiving demands and fewer resources to meet those demands. This is also the case for Hispanic, Asian American or Black caregivers, who in addition to those challenges, sometimes have higher levels of stress, strain and loneliness. We also learned that caregivers with incomes below the federal poverty level are more stressed than those who have more financial resources. These are all important findings for us to think about how to reach people differently — for example, in rural communities where resources are less accessible. These insights are timely because we’ve also been asked by the state to look at an equity plan for caregiving; so, this data is going to be very important as we plan for that endeavor.

Another new finding has to do with improvements in caregiver outcomes. We were able to look at some longitudinal analysis, which means we had information about caregivers when they entered a CRC program, and then several months later — after they’d received services. What we found is that their level of strain, loneliness and depressive symptoms had improved. This is exciting because, for some, it’s likely that the person they were caring for was experiencing worsening conditions. So, despite those changes, the caregivers were feeling better and more able to continue caregiving.

The last new finding is about the extent of outreach and education that the CCRCs are providing and how much that’s grown over the last year. Public outreach and educational programming nearly doubled — that’s very exciting! What’s even more exciting is that a lot of it is happening at a statewide level through the statewide collaboration. This means, for example, that a caregiver in Southern California can access resources that are provided out of Sacramento. Or, if a regional CRC doesn’t have staff who speak a caregiver’s preferred language, that caregiver can access education in their language through the statewide network.

Over the last year, we saw the increased production and availability of educational materials and outreach in multiple languages, which is an important innovation because it improves access to these vital resources. All this highlights one of the advantages of having a statewide system of education and outreach: The CRCs can provide resources across the state, across geography, and across languages and racial ethnic groups. This is a fantastic example of how support can be delivered via a collaborative network of resources rather than individual regional resources.

As we wrap up the fourth year of the CRC expansion project and look back over the successes, gains and improvements along the way, we’re wondering what’s next for this project and what’s next for the research using CRC data?

We’re excited to embark on the next phase of the work. We’ve now completed four years of evaluation and have substantiated that the CRC system is in place and is working well.

In terms of next steps, there are several levels of action that we’re thinking about. The first is for the CRCs themselves: They now have a robust set of data to help them drive decisions. They can use the data beyond just caring for the individual client — which is very, very important — to really think about their group of clients, in aggregate, and to imagine, well, how could they improve the quality of the programs and maybe even the direction of the programs? Sometimes the data suggests that new or different types of services or education might be helpful, so it can help them refine their offerings. The data also helps them refine outreach — to recognize populations they’re not yet serving and think about different ways of reaching those communities.

The other area that’s going to be vital for the CRCs is leveraging this data for advocacy. Now that they understand the kinds of issues caregivers face and the intensity of their needs, this is an opportunity for CRCs to educate and let legislators and others know the importance of continuing to support and enhance support for caregivers through the CRCs and other means.

Our work over these several years also points to the need for awareness — continuing to promote these centers as a resource for Californians. We’re reaching a decent number of caregivers, but we know there are a lot more out there who are not getting support. So, outreach is going to be critical.

We’ll be looking closely at the characteristics of the caregivers who are being served, as well as what’s happening in the communities where they live, in terms of resources, to identify gaps between what people need and what’s available to help them. That’s what we’re going to be doing as part of the equity plan for caregivers, which I mentioned before.

As part of that process, we’re looking at the data deeply and doing an environmental scan of the resources in the state. We’ve put together an advisory group of people who are caregivers and those who serve caregivers to help us look at that data and think about strategies to improve outreach and equity across the state. So, that’s something that we’ll be working on for the next couple of years and I think it’s a really important element.

Thank you, these are all fantastic insights on the evaluation. Is there anything else you’d like to add?

I’d like to commend all the leaders of the CRCs, including Kathy Kelly, who really spearheaded the design of CareNav. I think that what they did was incredibly visionary and sets California apart. It really is a leadership action on their part to show how to deliver services to caregivers in this new century and in new ways — as caregiver demographics and caregiver needs are changing. To have a platform like this that enables the design of services that fit what people need — it’s a real innovation. And I want to make sure that we appreciate in California the creativity and the strength of leadership among the CRC directors in making this happen, because it is unique and I think it could serve as a model for other states that are interested in serving caregivers.

Read the full report, Evaluation of Service Delivery and System Change by the California Caregiver Resource Centers, here. See a round-up of previous reports here, and our 2020 interview with Heather on evaluation report #1 here.

Heather M. Young is a nurse leader, educator, scientist and nationally recognized expert in gerontological nursing and rural health care. She serves as national director for the Betty Irene Moore Fellowship Program for Nurse Leaders and Innovators and is a professor and dean emerita for the Betty More School of Nursing at UC Davis. She co-leads the Healthy Aging in a Digital World initiative at UC Davis Health and co-directs strategic partnerships with the school’s Family Caregiving Institute, which serves family caregivers and the health professionals that support them. See her full bio here.