Atlas of Caregiving Pilot Study: What We’ve Learned
[Editor's note: This blog was originally posted on the the Atlas of Caregiving website on May 9, 2016. The Atlas of Caregiving Pilot is a partner project of Family Caregiver Alliance. FCA Executive Director Kathleen Kelly wrote in the foreword to the Atlas of Caregiving Pilot Study Report: “This project tests the boundaries of collecting data about the lived experiences of family caregivers across the spectrum of ages, health conditions, and family configurations.”]
“I should show this report to my children so they would have
a better idea of all that I do. But, even then, I don’t
know if they would really understand.”
Ida, a nurse and health coach, and her husband Ian, a retired law professional, enjoyed an active life up until 2010 when Ian was diagnosed with a debilitating disease. Now, she spends much of her time caring for him. She still tries to be as active as she can be, fitting in the activities she enjoys, like yoga, as her caregiving allows.
In the 24-hour period Ida spent engaged in our research, she spent three hours caring for Ian. Caring for him means a number of things, many of them non-medical tasks. Thanks to her activity logging, we know she spent time dealing with the indirect needs of his illness—replying to emails from health care providers and insurance companies, checking his medications and refilling them, cooking his meals, and preparing for a home visit from his trainer. We also know that she had a restless night of sleep because she was awake wondering, “What if he gets worse?” Despite this, her stress levels were low, indicating an extraordinarily quiet time in an otherwise tumultuous year.
What does it mean to be a caregiver? What do caregivers and recipients need?
Through Ida and Ian’s story, and 13 others, the Atlas of Caregiving Project’s Pilot Study seeks to help society more deeply understand the lived experience of family caregivers. We already know that caregiving is hard. If we are ever going to be able make it easier, more effective, and truly improve people’s lives, we have to know more about the reality of caregivers’ day-to-day experiences.
Today, we are releasing our first findings, and sharing the stories of family caregivers in this short blog series. We hope both will shine a light on the lessons our work holds for those whose lives and work are impacted by, or seek to impact, family caregiving, including employers, the tech community, service providers, researchers and caregivers themselves.
We did things differently
Although we are studying one of the most ancient of human rituals—caring for one another—we did it in an entirely modern way. The Pilot Study combined the latest in wearables and sensor technology with traditional interviews to paint a deeper and richer picture of the lived experience of family caregiving than we have seen captured before.
We collected tomes of data—both quantitative and qualitative. And, as we did for Ida and Ian, we’ve created a case study for each family that details their experience. We’ve also created care maps like this one of Ida and Ian’s. These maps help paint a visual picture of their caregiving experience and support networks.
What has all of this information gotten us? And how can what we learned help caregivers right now?
Developing a deeper awareness of activities, support networks, and time can bring clarity to family caregivers and those who help them. Most of the families who participated found that the process of recording and reflecting not only provided valuable information about what was being done, by whom, and what resources were needed, it also validated their sense of being exhausted or overwhelmed.
Caregivers are not alone. While each individual's situation is unique, there are common tasks, challenges, and emotions, regardless of demographics or medical conditions. Many factors influence the caregiver experience, and these factors can shift dramatically. What is constant, and faced by all the family caregivers we met, is this uncertainty, and the need for better ways to understand, communicate, and manage it.
It is clear that we need to learn from more than 14 families. To truly address the family caregiving crisis we need to devote greater resources to expand and scale our research efforts—more participants, better technology, a longer period of time. We need to develop and deploy practical tools that empower family caregivers. And, we need to bring actionable insights to entrepreneurs, policymakers, health care institutions, and all others seeking to support and impact family caregivers.
So much of what family caregivers experience is hidden from view. We like to compare it to an iceberg—all we see is the small portion that rises above the water, while a huge expanse lies beneath the surface. And our research bears that out. As Ida noted, “ There is no way anyone can know what’s involved unless you really live it.”
So, that is what we are seeking to do as best we can from the outside: research the experience while living it.
About the Atlas of Caregiving Pilot Study
The Atlas of Caregiving project is using cutting edge tools and analysis to study and map family caregiving—with the goal of making it easier and more effective. Our 14 Pilot Study participant families all live within two hours of San Francisco. Caregivers ranged in age from 30 to 73, and the care recipients from 3 to 101. They are managing a diverse set of conditions including Alzheimer’s, cancer, cerebral palsy, cystic fibrosis, diabetes and Parkinson’s.
The study combined emerging technology with traditional ethnographic interviewing to enable a comprehensive look at family caregivers’ lives. Each participant took part in some or all of the following:
- One-on-one interviews
- Logging their caregiving and non-caregiving activities, including how stressed they felt
- Wearing a Narrative Clip—a small, wearable camera, which took photos roughly every 30 seconds
- Wearing an Empatica E4—a wrist sensor, which collected data on movement, heart rate, and electrodermal activity
- Having a Netatmo Weather Station placed in their home to collect data on noise and CO2 levels, temperature and humidity
- Having SmartThings Motion Sensors placed throughout the home, which collected data on movement
The Atlas of Caregiving Pilot Study was supported by a grant from the Robert Wood Johnson Foundation., in collaboration with the Family Caregiver Alliance. You can download the Pilot Study Report here.
— Rajiv Mehta, Project Director