Pilot Study

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, family caregiver and Atlas of Caregiving pilot participant

Atlas of Caregiving builds upon a successful Robert Wood Johnson Foundation-funded pilot study, which set out to explore how a new approach to research could enable a truly comprehensive look at family caregivers’ lives. Completed in late 2015, the study received a positive cross-sector response, presenting valuable new data and insights while offering actionable information to caregivers and their communities.

Combining traditional ethnographic techniques with emerging technology, researchers applied newly developed methodologies and models to study fourteen families in the San Francisco Bay Area. Ranging in age from 30 to 73, caregivers cared for family members aged 3 to 101 managing a diverse set of health conditions including Alzheimer’s, cancer, cerebral palsy, cystic fibrosis, diabetes, and Parkinson’s.

Researchers collected and analyzed detailed data gathered from interviews, activity logs, and a variety of sensor technologies, including:

  • Narrative Clip, a small wearable camera which took photos roughly every 30 seconds
  • Empatica E4, a wrist sensor which collected data on movement, heart rate, and electrodermal activity
  • Netatmo Weather Station, an environmental monitor placed in the home which collected data on CO2 levels, humidity, noise, and temperature
  • SmartThings Motion Sensors, placed throughout the home, collected data on movement

Sharing our research data is key to the Atlas of Caregiving mission. As a result, we not only look at new ways to study family caregiving, we also develop new ways to present what we learn.

In the Data Visualizations at the bottom of the page, you can explore finely detailed information from our 2015 Pilot Study. Each set of diagrams represents a participant family’s household, showing data generated from activity logs, interviews, monitors, and sensors. In addition, you can see diagrams of each caregiver’s care network, illustrating the complex and dynamic care contexts of the families we studied. These care networks form the basis for our Atlas CareMaps, the first of our Practical Solutions.

To learn more about our Pilot Study, including methodology, observations, and implications, we invite you to download our Pilot Study Report and Data Visualizations by providing your email below.