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Please don’t tell me not to worry

by Sarah Barclay, Founder, MMF

 

What makes a parent start to lose trust in the health professions who are looking after their child? Three things stand out for me in the many conversations I’ve had with parents in my professional life, both as a medical journalist and as a medical mediator:

1. Not being listened to
2. Not being sufficiently respected as an “expert” in their own child*
3. Being told “there’s nothing to worry about” - we call this premature reassurance

‘They’re just not listening to me’

All too often parents describe in painful detail, how they have tried to make their voices heard and been ignored.

“They’re just not listening to me” are often the first words a parent will say when they’ve lost trust in the people looking after their child.

In my experience, all too often when a parent says they’ve noticed that “something isn’t quite right” with their child or that their child reacts badly to a particular drug or their breathing seems worse than it was yesterday or they’re worried that they’re being sent home too soon, that parent will turn out to be right.

One mother told me: “as a parent, if you feel something’s wrong, you don’t want to be right, but you just know. There have been so many occasions where I’ve really had to put my foot down and shout loud until I’m heard. If I hadn’t done that (my daughter) would have been in a very serious situation and that’s been recognised every time.”

Premature reassurance

In our training for healthcare professionals, we encourage them to avoid prematurely reassuring parents because it can have potentially serious consequences. What does premature reassurance look like? Telling a parent not to worry is one example. Here are some others: “I’m sure there’s nothing wrong,” “it’s normal to feel... x, y, or z," “You don’t really mean that” and “all of our staff are very experienced." All of these have the effect of shutting down further exploration of parental concerns. What are the consequences? Significant clinical issues may be ignored, the parent feels dismissed, trust is compromised and the seeds of conflict are sown.

Genuine reassurance, if appropriate and justified, can avoid or reverse all of these. What parent doesn’t want to be told that there’s genuinely nothing to worry about but unless they’ve been listened to, unless those concerns have been explored, attempts to reassure will be meaningless.

Fear of being labelled “difficult”

For many parents, finding the courage to tell professionals, “I’m worried” does not come easily because they are afraid of being labelled “difficult” by professionals, a fear that often seems borne out by the number of times we have heard parents or families described as “difficult” or “challenging.”

But when we start to explore what lies beneath that label, the answer is often “ a parent who takes up a lot of our time” “a parent who challenges our advice” “a parent who asks lots of questions.” In our training, we try to replace “difficult parent” with “difficult situation” because so often, difficult behaviours in the healthcare context come from fear and once we can explore and understand those fears, conflict is de-escalated or prevented.

Conflict is a two way process

Let’s step into the shoes of professionals for a moment though and remember the time constraints, the staff shortages, the level of real abuse and aggression that so many experience almost every day and you start to see how communication breakdown, loss of trust and ultimately, conflict, are the consequence of not feeling listened to - for staff as well as parents and patients. Conflict is a two way process and its impact is felt by all those involved.

Without acknowledgement of their own distress, without the confidence and ‘tools’ to recognise and manage conflict, professionals often find themselves drawn further and further into it. I have seen conflicts continue for weeks, sometimes months, sometimes years. The damage is painful to see but there’s a lot that can be done to prevent it happening in future.

Here’s one thing we’ve found useful: if I say “I’m worried” don’t tell me not to worry. Just ask me to tell you what it is I’m worried about. Too simple? You’d be surprised.

 

Read more about parents’ perspectives in this paper

Parents’ perspectives on conflict in paediatric healthcare: a scoping review

 

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