A frank analysis of the medical and emotional inequalities that pervade the healthcare process for critically ill children
Families who have a child with a life-threatening illness face a daunting road ahead of them, one that not only upends their everyday lives, but also strikes at the very heart of parenthood. In “Save My Kid,” Amanda M. Gengler traces the emotional difficulties these families navigate as they confront a fundamentally unequal healthcare system in the United States.
Gengler reveals the unrecognized, everyday inequalities tangled up in the process of seeking medical care, showing how different families manage their children’s critical illnesses. She also uncovers the role that emotional goals—deeply rooted in the culture of illness and medicine—play in medical decision-making, healthcare interactions, and the end of children’s lives.
A deeply compassionate read, “Save My Kid” is an inside look at inequality in healthcare among those with the most at stake.
"With deep empathy and drawing from personal experience, this mesmerizing ethnography explores the opportunities and pitfalls of hope when parents face the challenge of their child’s life threatening disease. Rather than pinning all our hopes on hope, Gengler calls for a broader and more flexible emotional spectrum in times of life-or-death health crises."
"Amanda Gengler is a gifted ethnographer whose compassion and insight illuminate parents’ harrowing efforts to maintain hope while seeking life-saving treatments for their children. In showing how emotions intersect with cultural health capital, this indispensable book exposes the complex ways social inequality affects our ability to hope and cope in times of crisis."
"Amanda Gengler movingly captures the high-stakes world of families coping with severe childhood illness and their struggle to maintain hope as they navigate the contemporary health landscape where inequality abound. A vivid demonstration of health as an arena that intensifies inequalities between families."