Welcome to the UCSF Patient and Family-Centered Care Research Center (PFCC-RC) 

We are delighted to tell you about our groundbreaking patient-and-family-centered care research. We are academic researchers, staff and graduate students in the health professions dedicated to partnering with patients, families, and communities to generate new knowledge to improve health care and ensure that it is respectful, collaborative, equitable, and high-quality for all.

• The Learning from Families (LFF) Study Series: In collaboration with Ronald McDonald House^®, the LFF1 study describes the key child, caregiver, and family characteristics and social drivers of health prior to a child’s hospitalization, as well as caregiver experiences of family-centered care and support services used by families at Ronald McDonald Houses in 15 countries. LFF2 extends the research to more countries. LFF Longitudinal describes child health, social drivers of health, and caregiver experiences of families 1-3 years after participation in LFF1.
• Hospital Leader Views on the Family-Centeredness of Pediatric Care: In collaboration with Ronald McDonald House® and the Institute for Patient- and Family-Centered Care (IPFCC), we conducted a global survey of hospital leaders’ views on FCC culture, policies, and practices in healthcare organizations serving children and provided preliminary validation of the Family-Centered Care Hospital Policies and Practices Scale (FCC-HPPS).
• Learning about Care and Support for Families of Hospitalized Children: In partnership with Ronald McDonald House of the Philadelphia Region^®, the University of Pennsylvania School of Nursing, and the Children’s Hospital of Philadelphia, we are exploring the use of natural language processing and medical record data to better understand the characteristics, needs, and services for families of hospitalized children, and will then embark on testing new co-designed support services for families.
• Neonatal Seizure Registry: Parent and Family Well-Being: In partnership with the Neonatal Seizure Registry, UCSF PFCC-RC is working with a national network of investigators to investigate the well-being of parents and families when children have neonatal seizures and other neurological conditions in childhood. UCSF PFCC-RC's work is conducted in partnership with a dedicated group of parents and parent-support organizations.

With gratitude to our funders and research partners:

Prevalence of Depression and Anxiety Symptoms Among Parents of Hospitalized Children in 14 Countries

This global study examined the mental health of parents and primary caregivers of hospitalized children across 14 countries. Drawing on survey data from more than 3,300 parents staying at Ronald McDonald House^® programs, the study found that nearly half reported clinically significant symptoms of depression and over two-thirds reported anxiety symptoms. Poorer perceived child health, housing insecurity, and experiences of discrimination were associated with higher risk, while social support, self-care, and family-centered hospital care were protective factors. These findings highlight the widespread and urgent need for routine mental health screening and supportive services for parents as an integral part of pediatric hospital care worldwide.