Every parent’s been there: the routine trip to the pediatrician for a vaccine or a sick visit where your child gets a strep throat swab. It’s tough to hear your child cry and then have them look to you for rescue, even from the nicest of nurses and doctors in the sunniest of offices. We’ve had our own share of childhood ER visits and it can be scary experience.
If you happen to be a parent of a child with a chronic problem, the stakes are higher and the road you’re now on may be paved with discomfort, pain, disruption and more than a little fear.
In the US, about 40% of children have a chronic health problem: 6M with asthma, 15M with rare diseases, 350k with diabetes, 15k newly diagnosed with cancer/yr, not to mention the millions treated for injuries every year.
Depending on the situation and your child’s temperament (among other things), it’s possible for them (and you!) to experience medical trauma.
I recently met a mom at an author event who happens to be the parent of one such child. But we’ll let her tell you her story. Her name is Melissa Hogan, and she’s written a book (with co-author Meghan Marsac) called Afraid of the Doctor, the first book written for parents to guide them with the skills to support their kids through medical challenges and specifically medical trauma.
Welcome, Melissa. Introduce yourself & tell us how you & Meghan came to write this book. (profession, location, momlife)
(If you like, you could read excerpt from preface: “…by the age of 35, I’d had 3 children in a 3 yr period…” to end of parag on p xv “Could anyone help him?”)
Medical Trauma
Definition: “Emotional impact of children’s health conditions and/or medical treatment. It can affect any family member—the child, a sibling without a condition, parent, grandparent or others.”
Can relate—in terms of difficult births, other adult experiences, but when a child is undergoing procedures, etc,. and they don’t have the knowledge, vocabulary, experience, regulation ability that an adult might, it lands differently.
If children are afraid during medical care, they can experience fight, flight or freeze or a combination of these. FIGHT: crying, clenching, yelling, arguing, aggression (biting, hitting, kicking). FLIGHT: refusing to engage, trying to flee, or wiggling away when they need to be still. FREEZE: holding breath, zoning out, not communicating. There’s also FAWN, which involves being extra nice and cooperative to try to avoid or delay the situation.
Sometimes, even children without chronic medical conditions can develop medical trauma reactions related to routine medical care. Does your child worry for days about shots at the doctor’s office? Are they afraid to go to the dentist, even for a cleaning? Over 60% of children report fears about needles. About 40% report significant fears about going to the dentist.
Medical Trauma is more common if someone:
- Experiences their medical condition or treatment as life threatening
- Has been exposed to other traumatic events
- Has less support from family
- Uses certain types of coping (avoidance)
- Is female
- Already has emotional health challenges beforehand
Shows up in Difft Ways …
Mood changes
Re-experiencing (play, talk)
Hyperarousal (vital signs, jumpy)
Avoidance (runs late for appts, refusal to talk about it
The Role Parents Play
Parents are everything. They’re managers, caregivers, entertainers, coaches, rule makers, and cheerleaders. Your child looks to you for cues on how to respond to what’s happening.
If you as a parent are feeling distress about the diagnosis or procedure, you can be sure your child will absorb that and respond to it or because of it.
Know how you parent. What’s your parenting style and how’s that going to affect the whole situation. Examples?
[In veterinary medicine, about 15 yrs ago, the concept of “fear-free” vet care started getting attention. DVMs began to adapt their practices so pets would have better experiences & les stress (higher fear the next time) during their visits. Instead of slick metal exam tables, for example, (which were ideal for keeping the animal still for a procedure), they added better footing so they’d feel more secure….and more treats (distraction, rewards) during and after. Pay attention to pheromones in the room, whether the doctors or the techs themselves might be having an off day (& more of a chance to get bitten). Also, like pediatricians who care for both child and parent, veterinarians have to pay attention to pet owners. Came to a middle ground: some holding is appropriate (like a weighted blanket to show leadership), but know when to stop; use intuition and input. ]
Depending on what sort of parent you are & what sort of child you have (& how those 2 harmonize), you could make things easier or harder during visits to medical professionals.
1/3 of parents say they feel rushed all the time and that they spend too little time with their children. Preventing and managing medical trauma involves thinking ahead and putting new systems in place…this can be challenging if you’re already rushed and disconnected!
You are the constant. You’re the leader.
Health Care System
Look at all the interactions your child has had with the system. Do you go to a teaching hospital where people pop in and out? Team of experts? Does pediatrician vary? Are there long waits?
Care Silos: teams not communicating with each other…Helps to have a written document (notebook) with all records/notes that you take each time.
Explain the COACH system you came up with.
Collect information
*Observe the situation
Ask questions (of self, child, doctors)
Choose your strategies
Help your child, get help from others.
What do each of these look like in practice? Give examples.
Medical Play
Stuff on Hand
Arranging Appointments differently
Reading books/Muscle Memory (Just Going to the Dentist by mercer meyer, e.g.,)
Desensitization
Normalization (a.k.a. don’t hide the insulin pump)
Adapting the Environment (Use Your 5 Senses!)… like a birth plan
Prayer, Body/Breath