Event Systems and Standards

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

Clarissa Hoover, MPH

Project Director, Family Voices

Clarissa started advocating for patients, families, and quality health care shortly after her daughter's diagnosis with cystic fibrosis in 2005. She completed her Masters of Public Health in 2013 with a focus on patient and family engagement in health-related services, inspired by her personal experiences with her daughter's health care. Her work with Family Voices is mainly focused on family partnerships in pediatric research and on supporting family-to-family organizations in every state and territory of the US.

Renee Turchi

Renee Turchi, MD, MPH, FAAP

Chair of Pediatrics and Pediatrician in Chief, General Pediatrics at St. Christopher’s Hospital for Children

Renee is the Chair of Pediatrics and Pediatrician in Chief of General Pediatrics at St. Christopher’s Hospital for Children. She is Medical Director of the Center for Children and Youth with Special Health Care Needs at St. Christopher’s Hospital for Children in Philadelphia, PA, a primary care practice dedicated to children with medical complexity. She is Medical Director of the Pennsylvania Medical Home Program at the Pennsylvania Chapter, American Academy of Pediatrics, a statewide program for pediatric primary care practices across Pennsylvania, and Director of the Maternal Child Health Program at Drexel University Dornsife School of Public Health. Her faculty appointments include Professor at Drexel University College of Medicine (Department of Pediatrics) and Drexel University School of Public Health (Department of Community, Health and Prevention). Her patients and families are her best teachers and biggest inspiration for her work.

Debbi Harris

Debbi Harris, MS, MA, GCAS-Creative Writing/Narrative Medicine

Systems Specialist, Family Voices of Minnesota

Debbi works on several special projects with Family Voices of Minnesota, including partnerships with the Minnesota Department of Health, the Collaborative Improvement and Innovation Network (CoIIN), the American Academy of Pediatrics (AAP), Gillette Children’s Specialty Healthcare, and others. She previously served on the board of The Arc Minnesota, becoming its first African-American woman board chair. Debbi has also represented families on the Bioethics Committees of Children’s Hospital of Minnesota, and Gillette Children’s Specialty Center. She chaired the Anti-Racism Position Statement Workgroup for The Arc US, where she serves on the Board of Directors. She has contributed to various publications, including Today’s Caregiver, Existere Journal of Arts & Literature, Kaleidoscope Magazine, a literary journal about disability, Salon.com, Pediatric Journal of Rehabilitation Medicine, Complex Care Journal, National Hospice and Palliative Care Organization Pediatric e-Journal, and JAMA Pediatrics. Her son Joshua was born prematurely, subsequently experiencing lifelong complex medical needs and disabilities.

Ryan Coller

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

Dr. Ryan Coller is the Research Director of the Pediatric Complex Care Program and Chief of the Division of Pediatric Hospital Medicine at the University of Wisconsin School of Medicine and Public Health. His research focuses on preventing hospitalizations for children with medical complexity, with the long-term goal to improve patient and family well-being across care settings, including the home. Dr. Coller is a member of the Editorial Board of Pediatrics and the National Quality Forum’s Patient Experience and Function committee.

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