About this Study
This report is the result of collaboration between the Pew Internet Project and the California HealthCare Foundation.
The Pew Internet & American Life Project is an initiative of the Pew Research Center, a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project is nonpartisan and takes no position on policy issues. Support is provided by The Pew Charitable Trusts.
The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California.
All quantitative, numerical data is based on national telephone surveys conducted by Princeton Survey Research Associates International (PSRAI).
PSRAI is an independent firm dedicated to high-quality research providing reliable, valid results for clients in the United States and around the world.
All quotes from caregivers were collected from members of the National Organization of Rare Disorders (NORD).
NORD is a nonprofit organization dedicated to improving the lives of all patients and families affected by rare diseases through advocacy, education, research, and patient services. NORD sent invitations to a sample of their membership and many caregivers responded by writing essays about how they help their loved ones live with rare conditions.
Additional thanks to our peer reviewers.
Kristen Purcell, associate director for research at the Pew Internet Project, provided statistical analysis related to the strength of the “caregiver difference” on online behavior.
MaryAnne Sterling, healthcare consultant, reviewed the draft report and provided insights based on her expertise as a policy expert and the sole caregiver for her elderly parents.