Earlier this year, the Santa Barbara Foundation invited the Atlas of Caregiving team to introduce care maps to members of the caregiving community in Santa Barbara County. We are grateful to the Santa Barbara Foundation, its partners Friendship Center, Marian Regional Medical Center, and Valley Haven; our local volunteers Mary Sheridan, Lisa Riolo, and Rebecca Madigan; and most importantly, each of the workshop participants, for the opportunity to learn from such an inspiring group.
This post originally appeared on the Santa Barbara Foundation website.
Can a map help you understand and improve your experience caring for a family member? Recently, the Santa Barbara Foundation and the Atlas of Caregiving brought dozens of family caregivers, social workers, and health professionals together to determine just that in a series of free workshops across Santa Barbara County. Participants learned about and created care maps—helpful ways to visually represent all the people and services involved in a family caregiving situation. Rajiv Mehta, Principal Investigator for the Atlas of Caregiving, has been at the forefront of the development of these innovative tools to address the challenges of caring for loved ones. He spoke with the foundation’s Caregiver Initiative Director Phylene Wiggins about the state of family caregiving and what was learned from the workshops.
Phylene Wiggins: What is your background?
Rajiv Mehta: For the past decade my work has focused on family caregiving: on how we take care of ourselves and our family and friends; how this care activity fits into the rest of our lives; the challenges we face in caring for others; and how these efforts could be made easier.
Prior to this, I worked in the technology industry at NASA, Apple, and several other companies. My formal education is in engineering at Princeton and Stanford, and business at Columbia. I have conducted research, developed products, spoken widely about family caregivers’ situation and needs, and consulted to companies, healthcare institutions, and government agencies.
PW: Why are you studying family caregiving?
RM: To help avoid, or at least mitigate, a major social crisis.
We know that tens of millions of Americans care for family members, and that demands on family caregivers will increase dramatically in the coming decade. It’s these family caregivers, not professionals, who perform the vast majority of health and care activities, at an annual cost of hundreds of billions of dollars in lost wages and actual expenses. These family caregivers will need better resources, tools, and support—none of which can be developed well without first understanding the caregiver’s experience.
In many ways, the success of healthcare is dependent on the work of family caregivers. Yet the study of family caregiving is an area that has, unfortunately, been relatively neglected. If we think of healthcare as a looming iceberg, family caregiving is the huge portion underwater, unseen by most, and ignored at great peril.
PW: How did the idea of the care map come about?
RM: I’ve spent a lot of time meeting and interviewing family caregivers. I came to appreciate that often many people were involved. It wasn’t just one person caring for one other person—there were family and friends, neighbors and co-workers, groups, and professionals. The care map was developed to make it easier to really see this collection of people, and how each is involved and connected. Sometimes, seeing information as a drawing leads to a different kind of understanding than reading about it or being told.
The first care map was the result of a summer project I put together for my college-age children who were looking for summer jobs. I put them to work conducting family caregiver research. I figured they would develop a sense of how complex our lives can be. That they’d present their findings to me in the form of a map, and that this “care map” would evolve to have such an impact as one of the tools we’d use and improve in the Atlas of Caregiving project—what an unexpected benefit.
PW: What did you learn from the care map workshops?
RM: It was really the first time we’d introduced care maps to such varied groups of family caregivers, social workers, nurses, and executives. So to learn that people found it worthwhile to draw their own care maps, to learn about the value they found in looking at their own maps, as well in sharing with others, gives us the confidence to grow this idea widely.
As a society, we tend not to discuss our caregiving situations publicly, or even with close family and friends. We created a safe and supportive space for people and it was great to see how open people were in sharing their own, often very difficult, situations, and how much they wanted to learn about other people’s situations.
PW: How might the workshops influence future work?
RM: We’ve already begun incorporating what we learned in these workshops and the simple answer is that we must do more. Specifically, we can guide more family caregivers, and the professionals with whom they interact, in drawing their own care maps. We can create more opportunities for family caregivers to share and learn from each other. And we can develop more tools that not only empower family caregivers to better understand and manage their situations, but assist people and organizations who are working to support these family caregivers.
The underlying Atlas of Caregiving project was itself an experiment to see if we could develop new methods to study family caregiving, and if so, could these result in important new insights. So far, the project has been a great success. With a much richer picture of the reality of day-to-day caregiving, there is a much greater likelihood that policies, products, and services can be improved and created to make family caregiving easier for families in Santa Barbara County and across the country.