Engaging Family Caregivers in Programs for People with Complex Needs

By the Playbook staff

Research has shown that many people with complex health needs are  assisted by family members, who often operate as de facto care coordinators. Yet, most care delivery systems don’t proactively identify and meaningfully engage or support family caregivers in visits or care plans. Jennifer Wolff, PhD, is a gerontologist and health services researcher who studies family caregiving and optimal models of care delivery for adults with complex health needs. We asked her a few questions to learn how complex care programs can better engage families in care for patients with complex needs.

How did you get started working on family engagement for patients with complex needs?

A: This is not something that I dreamed up myself. Initially, I was very interested in care delivery for individuals with complex health needs and disabilities. It was through my work as a health services researcher that I saw that individuals who have the most complex care needs are often the heaviest users of health services. And the quality of their care is notably poor.

At the same time, many of the individuals with the most complex health needs as well as disabilities rely heavily on family members. Typically, these family members fall into a role of providing care and co-navigating the health system with individuals. In the case of older adults with disabilities, their family caregivers are often providing 20, 30, 40, 50, or upwards of 60 hours of care per week. The fact that they have not been effectively engaged is a missed opportunity in terms of thinking about how to provide high-quality, collaborative care. These individuals who are foundational to care quality on an ongoing basis have largely been left outside of the discussion.

Family caregivers generally fall into their role without any formal preparation or  education in how to provide care or an understanding of the care system and treatments. Moreover, they often are not recognized in care delivery. With that context in mind, I became very interested in thinking about how we would change the current care delivery paradigm to more effective to systematically identify and better support family caregivers. The fact that we have not effectively engaged families is sort of the opposite of the Triple Aim of improving care, health, and costs.

How can engagement of these family caregivers improve care and lower costs?

A: The evidence doesn't exist to the extent that we might hope or expect. What we see is largely more observational in terms of the higher costs among individuals who lack support - we see a greater use of services among individuals who don't have a strong family network or who have a family network but with lower levels of education, for example. From a research perspective, it’s challenging to point to causality because individuals who rely on a caregiver who has lower capacity often have lower capacity themselves.

With that said, we know people receiving services from better prepared front line staff have better outcomes and lower costs. In terms of a mechanism of action, if we translate that same thinking and logic to the family caregiver workforce, we would expect to see the same kind of cause and effect where families who are better prepared, or better engaged, are able to provide higher quality care. And as a result, that the cost will be lower and quality of care higher.

And we've seen that to some degree in small randomized trials. But, not necessarily the kind of evidence that is easily translatable in practice, in terms of being implemented within an entire care delivery system, for example.

What do we know about the family members who are helping people with complex needs? Who are they? What are their challenges?

A: One thing that is very clear from the evidence is that caregivers and caregiving circumstances is highly heterogeneous across many different dimensions, including patients’ health conditions, the kinds of relationships between patients and families, and the quality of their interpersonal dynamics. There’s also heterogeneity in terms of the kinds of help that families are assisting with, in terms of families’ education, knowledge, strengths, what they bring to the table, as well as the other competing demands of life — whether they're working, whether they have children.

From this large, robust evidence base, it's very clear that there's not a single one-size-fits-all strategy that will work for all caregiving situations. What has been shown time and time again is the importance of tailored strategies address particular challenges within a given situation. So, many of the interventions that have been developed for caregivers have addressed issues like the home environment, psycho-social coping, and skill-building. Some of these strategies are difficult to diffuse because there has not been a reimbursement system in place for delivering services to a family member.

You’ve also done work on engaging patients and families with pre-visit agendas. How do those work?

A: What we know is that older adults with the most complex health needs, who are sicker and less educated, commonly attend medical visits with a family member or friend. These family members are also commonly involved in coordinating care across providers. They are verbally active and engaged in medical visits, but may be unsure of how they can be most helpful to the patients during the visit. We also know that patients’ and families’ perspectives often diverge.

I've developed a brief agenda-setting checklist that was piloted several years ago in a geriatrics clinic. It originally it was four pages and 23 items. Most recently, we streamlined it to a single paper and pencil checklist with about 12 items that are specific geriatric concerns that we know are under-detected and under-discussed in primary care. The idea is to have the patient and their family companion complete this checklist together in the waiting room before a visit, so it doesn't require much change from the provider. It engages them in what's otherwise dead time, when they're just sitting there.

There are two activities in the checklist. The first is for the patient and the family to discuss the role of the family member in a visit. For example, does the patient want the family member to leave the exam room so they have time alone with the provider? Do they want the family member to just listen, or listen and take notes, or to help them remind them of their questions? Do they want the family member to help them understand what the provider said?  

Then the second part of the checklist relates to the patient and the family separately, identifying their concerns about the patient’s health to discuss with the doctor. They think separately about this, then talk together about what they want to get out of the visit. This is a strategy to improve the productivity of what we know are short and often unproductive visits, where patients tend to be more passive, older adults in particular.

How would you advise complex care programs to get started with family caregiver engagement?

A: This is an area where there is not a large body of evidence or best practices, where there are well-developed interventions with implementation guides and protocols that can easily be rolled out. The strategies are also multi-faceted, so there is not really a single one-size-fits-all approach.

I think the first step is recognizing that individuals with complex needs often rely on another person in managing their care and implementing their treatments. Understanding their capacity and their need for information is a separate step that is important in ensuring quality care.

Certainly, recognizing that families have information needs is important. Even simple strategies like asking a family member whether they have any questions. For example, if a patient is being discharged from the hospital and their care plan requires the involvement of another person, making sure that it's not just in the patient’s report. There should be contact between the discharge providers and the family caregiver. For example, providers can follow up with a phone call after the discharge process to see if the family member’s questions have been resolved.

Those would be some simple strategies. But really, I think the possibilities here are really endless.