In this book addressing an oft-ignored subgroup (parents of children who experience medical trauma), Marsac and Hogan write from both personal and professional experience. Hogan, a nurse and mother of a child with Hunter syndrome (a rare genetic condition), and Marsac, a pediatric psychologist, are uniquely qualified to write this manual. Forty percent of children in the United States struggle with a chronic health problem, and these children are also at increased risk for emotional and behavioral problems. Marsac and Hogan guide parents through researching their child’s condition; choosing what information to share with their child (and then helping them deal with the information); organizing and managing medical treatment; making medical decisions (often with too little or too much information); helping their child deal with medical procedures and new medications; and advocating for their child. Each chapter includes questions for reflection and practical actions to take. When parents find themselves dealing with medical trauma during their child’s growing-up years, this book will be a helpful tool to navigate challenging and frightening situations.
— Library Journal
When we need support, we often look to people. But support can come from books too, and this is definitely such a book.
— Eva Alisic, PhD, associate professor, child trauma and recovery, University of Melbourne, Australia; Melbourne School of Population and Global Health, Australia
Afraid of the Doctor: Every Parent’s Guide to Preventing and Managing Medical Trauma will be extremely useful for any parent facing a medical ‘journey’ with their child. The book speaks to the very real impact of illness, injury, and medical treatment for children, parents, and the whole family. The authors bring their real-life experience and professional expertise to provide practical, sensible guidance and tools for parents. Parents in this situation need to know they are not alone, and need brief, clear guidance that they can use immediately—this book provides this and more.
— Nancy Kassam Adams, PhD, director, Center for Pediatric Traumatic Stress, Children’s Hospital of Philadelphia
The concept of medical trauma is not yet widely discussed in pediatric medical settings. Even among health care providers, the concept, much less its prevention or management is not well understood, despite valiant efforts to help children be comfortable with their medical care. Naming medical trauma for what it is and raising awareness of how to prevent and manage it will profoundly benefit children and their families, as well as health care providers and institutions.
— Pat Furlong, president/CEO, Parent Project Muscular Dystrophy
Children facing medical interventions have new allies: All the future readers of this extraordinary book. By combining home truths, lived experience, and clinical training, Hogan and Marsac have written a helpful, compassionate, and important book that should change the way health care is provided to children.
— Susannah Fox, former Chief Technology Officer for the US Department of Health and Human Services
Afraid of the Doctor addresses one of the most difficult topics any parent has to face, which is an ill child with critical health needs. Hogan and Marsac’s book is a readable roadmap and instruction manual for any parent trying to get medical care for their child while also caring for their child’s own emotional health. Some doctors can try to help parents, but often they do not or cannot. Some families can break under the extraordinary pressure, but some do get stronger, and having a plan can help parents survive not just intact, but enriched. This is a must read for parents with a child suffering a significant medical disease.
— Emil D. Kakkis, MD, PhD, CEO, Ultragenyx, Rare Disease Expert
There is simply no greater pain than witnessing the fear in your own child's eyes as they prepare for a medical procedure while you, the person they love more than any other on earth, stands by utterly helpless to ease their pain. In this exceptional book that seamlessly weaves their own firsthand knowledge and experience with the stories of four families facing medical trauma, Melissa Hogan and Meghan Marsac have created a groundbreaking guide for families facing medical challenges by providing real life strategies to help. Filled with compassion and empathy, the practical steps will benefit any family as they navigate typical to extreme medical journeys. Thank you Melissa and Meghan for providing parents pragmatic steps to help ease our special children's medical fears.
— Mark Dant, chairman, Board of Directors of The EveryLife Foundation for Rare Diseases and parent to a child with a rare disease
A book on this topic is desperately needed right now. Not only do we need a book that educates us on medical trauma, but also one that points us toward healing. This is that book. We can all learn something from Meghan and Melissa describing the scenarios we can't put into words and that leave parents exhausted and bewildered. More importantly, they describe solutions.
— John Whyte, MD, MPH, Chief Medical Officer, WebMD
Every parent and health professional impacted by medical trauma in children should read this gem of a book. It provides a perspective rarely written about, and poorly taught to those involved in the medical care of children. This book is clearly written, easy to read, and very thought provoking. The authors are to be congratulated on encapsulating a difficult topic with such clarity. This book will serve not only as an essential resource for parents and families, but also for the whole community of care givers who strive to help children with medical trauma every day.
— Steven A. Webber, MBChB, MRCP, chair, Department of Pediatrics, Monroe Carell Jr. Children's Hospital at Vanderbilt
Afraid of the Doctor brings to light a rarely talked about issue that affects so many children. Whether you are a parent or health care provider dealing with more common conditions or even rare disease, readers will find real world strategies and examples that will empower them to improve any child’s experience within our healthcare system.
— Lisa Berry, genetic counselor, Rare Genetic Disease Program, Cincinnati Children's Hospital Medical Center
This book is an invaluable resource for empowering parents to help their children navigate the medical experience and the trauma that so often accompanies chronic illness in childhood.
— Elizabeth R. Jalazo, MD, pediatrician and parent of a medically complex child
No one expects to receive a life-altering diagnosis. The trauma is real! This book offers valuable tools to help parents identify and understand the trauma of managing medical challenges and provides a real-world approach to dealing with complex systems so you can gain a sense of control. Ms. Hogan and Dr. Marsac excel at providing awareness to this reality so many face.
— Amy Brin, executive director, CEO, Child Neurology Foundation