Core Research: Pilot Study

What we did

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 methods 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

What we found and why we want to share

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 to others who care.

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.

Study 1

Ana’s Household

Ana (50s) has had cystic fibrosis since birth. She devotes several hours a day to care for her own condition. She also cares for her teenage son Albert, who has depression.

Study 2

Chantal’s Household

Chantal (50s) has resigned work to care for her mother Debby (80s) who requires 24×7 care. Additional support comes from a paid home aide and other family members.

Study 3

Fay’s Household

Only-child Fay (30s) cares for her mother Josephine (70s) who has Alzheimer’s. With no one to help her, she has put PhD studies on hold to provide 24×7 care.

Study 4

Gabrielle’s Household

Gabrielle (60s) is the primary caregiver of her mother Karen (101), who has Alzheimer’s. Gabrielle also has health issues of her own and the sleepless nights and caregiving needs of her mother have taken a toll.

Study 5

Hanna’s Household

Hanna and husband Gaston care for her brother Harvey, who has several major health issues. Gaston also cares for his mother, while managing his own chronic pain and edema. Both Hanna and Gaston also work.

Study 6

Fernando’s Household

Fernando and his wife Laura (50s) are the primary caregivers for Fernando’s mother Maria (80s) who has Alzheimer’s disease as well as other health conditions. Together, Fernando and Laura have built a care network to support Maria.

Study 7

Ida’s Household

Ida (70s) cares for her husband Ian (70s) who has Lewy Body Dementia and Dysautonomia. They moved to San Francisco to be nearer to their children two years ago.

Study 8

Nadine’s Household

Nadine (50s) lives with her husband Jerry and two teenage sons, Larry and Karl. Karl has Type 1 Diabetes. Nadine is his primary caregiver.

Study 9

Odette’s Household

Odette (70s) and her husband Marco (70s) share their home with several other people: their son, son-in-law, and five tenants. Marco has Parkinson’s disease. Odette is his primary caregiver, but several others are also involved.

Study 10

Nate’s Household

Nate and Patty, both in their 30s, care for each other. Patty has multiple sclerosis (MS) and Nate has glioblastoma, a terminal condition.

Study 11

Sally’s Household

Sally (50s) cares for her son Pablo (20s), who has behavioral and emotional difficulties stemming from XYY Chromosome Disorder.

Study 12

Tammy’s Household

Tammy (40s) and her husband Rafael (50s) care for their pre-teen children, Wanda and Sam. Wanda has severe epilepsy and cerebral palsy. She requires 24×7 care. Sam has severe autism and also requires a lot of care.

Study 13

Teddy’s Household

Teddy (40s) and his wife are the primary caregivers for their two young sons, Van and Walter. Van has Aspergers (ADHD type) as well as encopresis, and Walter has cyclical vomiting syndrome.

Study 14

Omar’s Household

Omar (40s) and his separated wife Cindy (40s) share a home with their young son Bob, who has Asperger’s.

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