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 House programs 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:

Factors associated with the mental health of parents during and after their child's hospitalisation: an international longitudinal prospective cohort study

This global study examined the mental health of parents and primary caregivers of hospitalized children over time - from hospitalization to post discharge. Among more than 3,300 parents staying at a Ronald McDonald House in 14 different countries, half reported clinically significant symptoms of depression during their child’s hospitalization, which only decreased slightly to 45% at discharge and 43% post discharge. Over two-thirds of parents reported clinically significant symptoms of anxiety during hospitalization, which only decreased slightly to 60% at discharge and 59% post discharge. Parents with more social support and self-care had decreased probabilities of depression and anxiety symptoms, while those with more unmet needs and poorer rating of their child’s health had increased probabilities of these symptoms over time. Parents who reported higher levels of family-centered care also had decreased probabilities of depression symptoms over time. These findings show that parental depression and anxiety symptoms were very common and decreased only slightly over time. Routine mental health screening and ongoing supportive services are needed to help lower the risk of prolonged parental mental health symptoms.