A Family-Centered Research Agenda for Supporting Caregivers of Children with Special Health Care Needs

Date: Tuesday, February 15, 2022

Time: 10:00 am to 11:00 am PT

Family caregivers are the foundation of the pediatric health care system. However, many gaps exist in the support that is available to caregivers, due to low visibility of their work and impact within the healthcare system. Family leaders and researchers from across the country have partnered to develop a national research agenda focused on improving the health care system for children and youth with special health care needs (CYSHCN). Their newly published article titled Understanding Caregiving and Caregivers: Supporting CYSHCN at Home, is one in an eight-part series to be published as a supplement to Academic Pediatrics.

In this webinar, the article’s authors will discuss the necessary and integral role of family caregiving, describe their study's findings, and reflect on the implications of their recommendations. We suggest that attendees read the article prior to the webinar.

This work is led by the Children and Youth with Special Health Care Needs Research Network (CYSHCNet). CYSHCNet was founded in 2017 through a cooperative agreement with the Health Resources and Services Administration’s Maternal and Child Health Bureau.

Speakers:

• Clarissa Hoover, MPH, Project Director, Family Voices
• Debbi Harris, MS, MA, GCAS-Creative Writing/Narrative Medicine, Systems Specialist, Family Voices of Minnesota
• Renee Turchi, MD, MPH, FAAP, Chair of Pediatrics and Pediatrician in Chief, General Pediatrics at St. Christopher’s Hospital for Children

Moderator:

Ryan Coller, MD, MPH, Research Director, Pediatric Complex Care Program and Chief of the Division of Pediatric Hospital Medicine, University of Wisconsin School of Medicine and Public Health