Parent youth & child disabilities


Children and youth with special health care needs (CYSHCN) have chronic conditions that require extensive health care and supportive services. Self-Management Support for caregivers of CYSHCN refers to assistance to increase families’ skills and confidence in managing their children’s health. Little is known of the extent to which SMS is provided in care for CYSHCN, and there are no measures tailored to this population. In collaboration with families of CYSHCN, disability self-advocates, pediatricians, and pediatric researchers, the research team developed and pilot tested an instrument to assess SMS in pediatric practices. In 2024-25, the research team will conduct a statewide survey across 8-10 clinical sites to better understand the status of self-management support for families in California.

Become a Clinic Site for the AFFIRM California Study!

In 2024-25, we will be working with 8-10 clinic sites in California to reach caregivers of children with special healthcare needs so that they can take part in a brief survey to improve support for children and their families.

What would be entailed?

Clinic sites would be asked to allow 1-2 UCSF staff members to conduct waiting room recruitment for 2-3 weeks.

No sharing of patient information is required for the site. Clinic personnel do not need to recruit patients.

How does this benefit families?

Findings from the study will guide policies and programs to help improve care for families of CYSHCN.

Participants will receive a $50 gift card as a thank you for participating.

How can I learn more?

Reach out to the project director (Rachel Willard-Grace) or project manager (Abby Cabrera). 

Study Factsheets



AFFIRM California Information Sheet for Clinic Sites

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This study was made possible due to generous support from the Lucile Packard Foundation for Children’s Health.