The Next Advance in Understanding Family Caregiving

Carol Levine

The Atlas of Caregiving opens a new chapter in caregiving research. It adds innovative methods available today through technology to build on existing knowledge. I am pleased to be a part of this project and hope to contribute to it from my perspectives as a caregiver researcher and as my late husband’s caregiver for 17 years.

When I joined the United Hospital Fund in 1996 to explore what I was seeing and living—the unacknowledged and usually unsupported handoff of complex care to unpaid and untrained family members and friends—there were no guideposts. Although there was a lot of caregiving research, none of it seemed to capture the changes in health care that were affecting millions of people. Through the years, with the guidance of colleagues at the United Hospital Fund and elsewhere, and the support of forward-looking funders, we have learned to match the hard questions with the most appropriate research methodology.

For example, in one of our first efforts, we asked: How much are family caregivers saving the health care system with their unpaid labor? Finding no answer, we asked Peter Arno, a health economist, to work with us to develop the first estimate of the economic value of “informal” caregiving. The methodology and results have been updated over the years, and are now standard points of reference in describing family caregiving. But until we asked the question, and provided an answer, no one had done the work.

In another groundbreaking study, we used traditional focus groups to describe what family caregivers and health care providers alike saw as critical points in caregiving—what we called “rough crossings,” transitions in care, particularly from hospital to home. That study and others that have shown the financial costs and bad health outcomes of poor transition planning have led to national efforts to improve transitional care.

We used extensive interviews with family caregivers and health care providers to develop a website, Next Step in Care, that has guides for both audiences on how best to manage transitions in care. With those guides free and available in English, Spanish, Chinese, and Russian, the website gives us a platform to keep users up to date on regulatory and other changes—a challenge in itself.

More recently, we collaborated with AARP Public Policy Institute to do an online national survey of family caregivers about the medical/nursing tasks they perform, documenting for the first time in the resulting report Home Alone the extent of these tasks and the lack of training to perform them.

Each of these methods, and many others, has strengths and limitations. The Atlas of Caregiving adds a new dimension to enrich our understanding of the experience of family caregivers as they go about their daily routines. What causes the most stress? What comes naturally to some but not others? What kind of help would be most useful? These are the new questions that have to be asked and answered.

As the pilot begins to reveal patterns and areas for further exploration, we will be able to provide a more complex, and therefore more realistic, view of what it means to be a family caregiver in different situations and for different people. Health care and social service providers, policymakers, and caregivers themselves, as well as the people they care for, will be the ultimate beneficiaries. As the United Hospital Fund moves forward in an effort to create a framework for understanding family caregivers’ perspectives on the use of technology, we look forward to learning from the Atlas’s unique approach and innovative research methods.