Tag Archives: Charlie Gard

Charlie Gard’s Case and Parental Advocacy for Chronically Ill Children

Katherine Rafferty, Ph.D., M.A.  

“My biggest issue is this: a parent is a caregiver and then of course the health professionals are the caregivers, but you know, who gets the final say?”

-Mother whose daughter has osteosarcoma

This essential question was posed by the mother of one of 33 children living with chronic conditions whose parents I interviewed for my recently published study in the current issue of Health Communication. The study is titled, “You know the medicine, I know my kid”: How parents advocate for their children living with complex chronic conditions.