Addresses the needs of parents of children who experience medical trauma – negative experiences in the healthcare system that may cause resistance among children to even going for routine care
Afraid of the Doctor is the first book written for parents with the primary goal of equipping them with the knowledge and skills to support their children through medical challenges on a day-to-day basis, and specifically with medical trauma—experiences in healthcare that can profoundly affect a child’s response and willingness to even go to the doctor. The challenge of medical trauma is often under-recognized and overlooked in the healthcare system, leaving parents to learn about it and manage it on their own. When parents understand medical trauma and learn strategies to reduce and even prevent it, they become empowered to better care for their child’s emotional and physical health.
Afraid of the Doctor integrates character stories throughout the book to illustrate the signs and symptoms of medical trauma and the roles parents and caregivers play in supporting their child through medical challenges. Readers will find twelve distinct strategies they can implement to help prevent and reduce medical trauma and otherwise support their child while facing medical interventions or a chronic condition. These strategies are illustrated through anecdotes, step-by-step guides, examples, and research evidence. With compassion and empathy, Meghan Marsac and Melissa Hogan offer parents the tools they need to choose the strategies that will work best for their children and their families, and how to modify them to address their unique situations.
In addition to addressing the traumas that children may face, the authors carefully discuss the types of trauma that a parent may experience as they care for a child with a medical condition, equipping them with tools to recognize and address their own trauma experience related to their child’s medical care.
Melissa J. Hogan, JD, is a parent to a child with a rare, genetic disease who has faced a countless number of surgeries, specialists, and as a result, medical trauma. In addition to caregiving and advocating for her son’s needs, she is a consultant for clinical trials in rare and neurodegenerative disorders and has published in several medical journals. She also founded the leading research and advocacy foundation in Hunter syndrome, Project Alive, which has raised millions of dollars for research, and previously worked as a attorney in the healthcare field. She is a frequent speaker on health care and educational advocacy, rare diseases, and clinical trials. She lives with her three sons and a service dog outside Nashville, Tennessee.
Meghan L. Marsac, PhD, is a pediatric psychologist with expertise in helping children and families adjust to and deal with medical conditions. She is currently a tenured, Associate Professor at the University of Kentucky. She has published her NIH and foundation-funded research on medical trauma in lead medical and psychology journals. She has presented at national conferences for the American Academy of Pediatrics, the International Society of Traumatic Stress Studies, the Society of Pediatric Psychology and the Academy of Pediatric Physical Therapy among others. She has ongoing international collaborations on the impact of COVID-19 on preschool children and their caregivers. She also leads medical trauma training for healthcare professionals through the national Center for Pediatric Traumatic Stress. In addition, she is the lead creator of the Cellie Coping Kit for children with medical conditions. She lives with her family in Lexington, Kentucky.
How to Use This Book
PART 1 THE REALITY OF MEDICAL TRAUMA
Chapter 1: Where Love Meets Medicine
Chapter 2: Parenting Through Medical Challenges
Chapter 3: The Medical Journey
PART 2 MEDICAL TRAUMA 101
Chapter 4: What Exactly Is Medical Trauma?
Chapter 5: How Do I Know if My Child has Medical Trauma?
Chapter 6: What Isn’t Medical Trauma?
Chapter 7: Medical Sprints Versus Medical Marathons
Chapter 8: Your Family and the Health Care System
PART 3 WHO ARE YOU?
Chapter 9: You Are a Person, Then a Parent
Chapter 10: You Are a Caregiver
Chapter 11: You Are the Leader of Your Child’s Medical Team
Chapter 12: You Are a C.O.A.C.H.
PART 4 STRATEGIES FOR PREVENTING AND REDUCING MEDICAL TRAUMA
Chapter 13: General Strategies: Parenting Children with Medical Conditions
Chapter 14: Planning Ahead: “Planning Makes... Better”
Chapter 15: Communication: “Let’s Talk About It”
Chapter 16: Consistency: “Knowing What to Expect”
Chapter 17: Behavior Charts: “Not Bribing, Rewarding”
Chapter 18: Additional Visual Supports: “Creative Preparation”
Chapter 19: Desensitization: “Let’s Get Used to It”
Chapter 20: Medical Play: “Children Learn Through Play”
Chapter 21: Adapting the Environment: “Make Yourself at Home”
Chapter 22: Timing: “6 am or 6 pm?”
Chapter 23: Distraction: “Squirrel!”
Chapter 24: Reinforcement: “Walk the Line”
Chapter 25: Body Control: “Mind-Body Connection”
Chapter 26: Switching Strategies: “If at First You Don’t Succeed, Try Again”
PART 5 SPECIAL POPULATIONS
Chapter 27: Children with Cognitive Impairment
Chapter 28: Children Who Are Nonverbal or Who Have Communication Needs
Chapter 29: Very Young Children
PART 6 CAN PARENTS DEVELOP MEDICAL TRAUMA TOO?
Chapter 30: Medical Trauma in Parents
Chapter 31: What’s “Wrong” With Me?
Chapter 32: How Can I Support Myself?
PART 7 WRAPPING UP
Chapter 33: Seeking More Help
Chapter 34: Epilogue
About the Authors
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.
When we need support, we often look to people. But support can come from books too, and this is definitely such a book.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
10/2/21, Psychology Today: Meghan Marsac wrote an article about how caregivers can support children with medical conditions.