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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
Nadine (50s) lives with her husband Jerry and two teenage sons, Larry and Karl. Karl has Type 1 Diabetes. Nadine is his primary caregiver.
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.
Nate and Patty, both in their 30s, care for each other. Patty has multiple sclerosis (MS) and Nate has glioblastoma, a terminal condition.
Sally (50s) cares for her son Pablo (20s), who has behavioral and emotional difficulties stemming from XYY Chromosome Disorder.
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.
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.
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.