"Save My Kid" How Families of Critically Ill Children Cope, Hope, and Negotiate an Unequal Healthcare System / Amanda M. Gengler

Format:

Book

Author/Creator:

Gengler, Amanda M., Author.

Language:

English

Subjects (All):

Parents of terminally ill children--Psychology.

Health services accessibility.

Critically ill children--Family relationships.

Child health services.

Catastrophic illness--Social aspects.

Health services accessibility--United States.

Child health services--United States.

Catastrophic illness--Social aspects--United States.

Catastrophic illness.

Parents of terminally ill children.

Critically ill children.

Critically ill children--Medical care--United States.

United States.

Physical Description:

1 online resource (193 pages)

Place of Publication:

New York New York University Press [2020]

Summary:

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.

Contents:

Frontmatter

Contents

Preface

Part I: Families in Crisis

1. Hope Is a Thing with Feathers

2. Studying Families of Critically Ill Children

Part II: Unequal Illnesses

3. Care- Captaining: Climbing the Rungs of the US Healthcare System

4. Care- Entrusting: Staying on the Medical Sidelines

5. Blending and Switching Care Strategies: Finding Emotional Equilibrium

Part III: Tangled Up in Hope

6. When Everything Is Not Enough

7. The Fragility and Tenacity of Hope

8. Emotionally Perilous Paths: Illness Management, Emotion Management, and the Production of Healthcare Inequalities

Acknowledgments

Appendix A: Doing Fieldwork in Emotionally Fraught Settings: A Brief Reflection

Appendix B: Family and Physician Demographics

Notes

References

Index

About the Author

Notes:

References Seite 223-230

Includes bibliographical references and index.

Description based on print version record.

ISBN:

1-4798-3432-7

OCLC:

1129193631