Dr. Van Houtven is an authority on ageing and economics. Her research focuses on how family caregiving affects health care utilization, expenditures, health, and wealth outcomes of care recipients and caregivers.
What is the VA’s role in caregiver research, and what makes the system so unique?
In 2011, the VA (Veterans Administration) was mandated by law to support caregivers of veterans whose service ended after 9/11, becoming the largest publicly-funded support program in the country. Veteran service organizations lobbied hard when the Iraq War brought many survivors home with a host of physical and psychological injuries. Previously, the VA had focused solely on the veteran, but post- 9/11, it acknowledged equal importance to support their many caregivers.
The Caregiver Support Program took one year to implement across 150 VA sites and offered stipends, support programming, and health insurance to approximately forty thousand participants by 2020. Each year continued participation is assessed, which brings about a new set of challenges for caseworkers—having to evaluate the hidden symptoms of PTSD care versus visible physical injuries. It’s difficult to gauge caregiver tasks for PTSD, like companionship or helping avoid overly stressful and triggering situations.
My team is the primary evaluator of the program that supports caregivers of veterans; we evaluate the policy’s impact and provide feedback to the VA headquarters in Washington on whether the program is improving the lives of caregivers and veterans. We’ve examined if the post-9/11 program reduces costs of veteran care (it does not), reduces financial strain on caregivers (it does), and which supportive services are highly valued by caregivers (support line; counseling). The program’s success has spurred new projects, such as examining whether caregiver support helps veterans re-enter the labor force (promising findings) or reduces suicide ideation (in progress).
Unlike most social services, 80% of the $500 million annual budget goes directly to caregivers as stipends with much of the remainder funding direct social work support, so the program is a model for other healthcare systems to deliver services without exorbitant overhead costs. We hope that the VA Caregiver Support Program will be used as a guide for a national caregiver strategy and are seeing some initiatives. For example, half of all states have a mandate to record the caregiver’s information prior to hospital discharge to improve care coordination with family and friends (e.g., the CARES Act), and there is a call for a national caregiver strategy (e.g., the RAISE Act). But these remedies have been pretty modest in reaching a large proportion of caregivers as well as those most in need.
In your research, you’ve looked at how lack of support affects the caregiver. But does lack of support have a downstream effect on the veteran, and have we made headway in dealing with these situations?
Yes, most of the focus has been on the caregiver, and unfortunately there’s a lack of evidence on how the caregiver’s health and strain affects the care recipient. For example, if we have a distressed caregiver, does this lead to bad outcomes such as abusive situations, or an increase in costly nursing home entry? There is some evidence that the answer is yes, but more is needed. I’m actually working on an R01 to understand what happens to care recipients when they receive unpaid care from family and friends versus paid formal home healthcare. This project follows up on evidence that having family involved does improve care-recipient outcomes overall and reduces healthcare costs. In addition to understanding how the source of care matters, we need to know what happens when caregivers face too much strain. Clinicians know why it’s important to have caregivers involved in the caregiving process, but we don’t have hard evidence on what happens to the quality of care when the caregiver suffers.
Implementation is hugely important in scaling-up research results. Can you describe some of your research that has been scaled throughout the VA system?
With QUERI (Quality Enhancement Research Initiative), I’ve worked with other PIs to implement evidence-based programs throughout the VA. For example, we started a caregiver skills program in Durham that was tested through a randomized controlled trial and was rolled-out in eight VAs. I’m encouraged that six of the eight sites have so far accomplished what we’ve asked, and that our program just received a great score, allowing us to scale nationally in the near future. With the onset of COVID-19, we’re now virtually delivering the caregiver skills program, because caregivers need more support today than ever before.
Successful implementation means using existing clinical resources to scale in a way that’s feasible and affordable. We will test a self-guided approach as we move from working with the original 8 sites to national implementation. Sites will use a toolkit along with group facilitation, rather than one-on-one trainings. If sites can’t launch with a self-guided approach, we will randomize some of them to provide more support. This will help us understand why some sites need more support than others when implementing the program. Organizational readiness scales can help us predict who ‘should’ be better able to launch, but as in many situations, sites we think will be successful may not be. We’ll also estimate the business case for this and two other evidence-based VA programs (a Hospital Mobility Program called STRIDE and a Group Physical Therapy Model of Care called GROUP PT), then determine the implementation costs for healthcare systems outside the VA.