Youth & Family Compensation Guide and Glossary of Research Terms

Partnering with Youth & Families in Research: A Compensation Guide for Youth & Families helps youth and families understand their roles as members of a research team, including things they should know, how compensation works, and tips on working with a research team. Read the Guide here.

Reading research papers can be frustrating if you are not familiar with the jargon. To help you keep up with the latest findings in CYSHCN research, we have provided a link to a comprehensive glossary of research terms.

The Conversation Project is a national initiative dedicated to helping people talk Pediatric kit cover

about their wishes for end-of-life care. The Pediatric Starter Kit is specifically designed to help parents of seriously ill children who want guidance about “having the conversation” with their children.


Family Voices is pleased to share our Issue Brief, A Framework for Assessing Family Engagement in Systems Change, funded by the Lucile Packard Foundation for Children’s Health. This is the result of a year-long project, conducted in collaboration with family-to-family organizations and diverse stakeholders, to identify the four domains and key criteria that organizations can use to identify how well they engage families at the systems level of their work (including research). Read and download the Issue Brief here. Please share the Issue Brief widely with your families and professional partners. Thank you!