If your child is afraid of — or refusing — a medical procedure, here’s how to help

The coronavirus pandemic has brought medical procedures, like COVID-19 testing and COVID-19 vaccinations, into our day-to-day lives like never before. These experiences aren’t easy for everyone, especially for children.

But even outside a pandemic, medical procedures such as vaccinations and blood draws are common throughout childhood. When asked, children reliably say that their biggest concerns about medical procedures are needles and pain. They are also worried that their comfort won’t be taken into account. And evidence says they’re right.

• Co-author of this article with Kathryn Birnie is Meghan McMurtry, University of Guelph

Research is also clear that when children’s pain and fear aren’t well managed during medical procedures, there are both short- and long-term consequences. Procedures can take longer and have an increased risk of adverse events (such as fainting or being physically restrained), and children are likely to need more medications for pain and to develop negative or traumatic memories.

These fears can lead to delays or avoidance of necessary health care, even when children become adults.

We have prepared tips to make COVID testing and needles comfortable, and those recommendations are really important. But here’s the thing: what helps for pain and low-to-moderate fear isn’t enough when children are very afraid.

If children’s pain and fear aren’t well managed every time, medical procedures can get harder and harder until children begin to refuse. Sometimes people interpret a child’s refusal as misbehaviour. Nothing could be further from the truth.

With repeated negative experiences, a child’s distress and fear can become so high that it can produce a true adrenaline fight-or-flight response, similar to if they were face-to-face with a lion. Traumatic stress from medical procedures is in the eye of the beholder: a child’s own experience of the procedure, and fear response to it, are more important than the “objective” severity or how painful or scary it may seem to others.

Coping with fear and distress

We have heard from parents that they want to know more about what to do when their child is refusing a procedure because of high levels of fear, often resulting from a previous negative or traumatic experience. Sometimes when children become highly distressed, adults will restrain them in an effort to “just get the procedure over with.”

We want to be clear: Holding a highly distressed child down for a routine medical procedure is never OK, isn’t patient-centred care and has the potential to make things exponentially worse in the long term.

A child’s fear must be taken seriously and addressed before they can benefit from efforts to manage pain and low-to-moderate fear. If your child is very afraid of a medical procedure (for example, COVID testing, vaccinations, blood draws, dental treatment), the following science-backed steps are needed.

Exposure-based therapy

In exposure-based therapy, someone gradually faces their fear head on, starting with easier situations and working their way up to more difficult ones. In this case, it involves educating your child about what is going to happen and why, and enabling them to practise gradually facing each step of the medical procedure before the actual procedure itself.

Make space for their feelings and have a conversation.

• Validate your child’s concern: acknowledge their feelings and why they make sense (even if you don’t agree or can’t relate).

Figure out what is worrying them about the situation.

• Take an open, non-judgmental and curious approach to understand what scares them about the medical procedure.

• Don’t assume. Ask. Make sure your child understands what they are being asked to do as part of the medical procedure, why they are being asked to do it, what will happen, what it will feel like, how long it will last and who will be there. Answer any questions that they have and correct any misperceptions. You might need to get some information from a health-care professional so that you have all the answers.

• What is the focus of their fear? Older children and youth can often tell you what they are worried about regarding the procedure. For younger children, you may have to offer suggestions or alternatives and make your best guess.

Practise facing the fear

For fears that are out of proportion to the danger posed, children will need to practise facing their fear head on. You need to generate a list of fear-inducing situations related to the procedure, such as:

• talking about the procedure;

• seeing pictures or videos of it (tip: make sure these are positive videos where minimal or no distress is shown);

• playing with related toys/equipment;

• driving past the health centre or site where the procedure will take place; and

• the micro-steps leading up to the procedure itself (such as sitting in a chair, having a tourniquet applied or their arm cleaned with an alcohol swab, etc.).

Order the situations from easiest to hardest by getting a fear rating for each one. This becomes their “fear ladder.”

Tip: for children ages five to seven, you can use the Children’s Fear Scale; for seven-year-olds and older, a zero-to-10 scale ranging from no fear at all to most fear possible; for younger children, you could order the situations by asking them to make choices in head to head comparisons in which the child picks which one is easier out of two, or if all else fails, your best guess.

Help your child practise facing their fear by experiencing these situations. They have to stay in the situation long enough so that their fear will come down, and/or that they learn whatever they’re worried about isn’t going to happen or if it does, they can survive it. Remember, this is for fears that are worse than the actual danger of the situation.

This is hard work! So, for each exposure or practice, your child should earn a reward. You can set up a reward program to go with each step of the fear ladder. Rewards should be small, something you are OK to withhold if they don’t earn them, and don’t have to cost money (for example, playing a special board game or giving a five-minute massage, rather than a new toy).

Trouble-shooting

Your child has to stay in the situation long enough. If they escape the situation before their fears have subsided to a manageable level, it will just maintain their fear. Taking some deep breaths and encouragement from you can help!

If a step is way more difficult than the previous one (too big a gap in the ladder), try to break down the situation by varying factors like who is there as a support, or start with imagining it first before trying that step in real life. Each step might have to be practised multiple times before the fear reduces.

Don’t rush through — there are no points for speed! It’s best to make sure your child is ready to make it as positive an experience as possible, and to make things easier in the future. Once your child has made it to the top of their ladder, the next step is the procedure itself.

Don’t forget that strategies to manage pain from medical procedures are also important! For more help, Anxiety Canada has fantastic resources.

The science-backed principles outlined in this article can help children and their parents to feel confident about medical procedures. As parents and clinicians, we have an opportunity to practise too: preparing and empowering children to take an active role in their health, confident that they are the focus of patient-centred care.

This story is part of a series produced by SKIP (Solutions for Kids in Pain), a national knowledge mobilization network whose mission is to improve children’s pain management by mobilizing evidence-based solutions through co-ordination and collaboration.