Why It Matters
We often forget to ask children what matters to them. When we make assumptions, we sometimes get it wrong. What we hear when we ask may surprise us.
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Asking Pediatric Patients, “What matters to you?”

By Lucy Pickard Sullivan | Friday, March 18, 2016

What Matters to You pediatric posters

Dr. Nishma Manek and Dr. Lucy Pickard, physicians at Imperial College Healthcare in London, describe what happened when they started asking their pediatric patients a simple question.

If you were a patient and I asked you what matters most to you, what would you say? If you have children and they were patients, what would they say?

How often do we stop and ask our patients? Do we remember to ask our pediatric patients?

We tend to make assumptions about children. Adults often answer for them. When we guess, we sometimes get it wrong.

As doctors, nurses, and play specialists in pediatrics at St. Mary’s Hospital in London, we are changing from asking children and parents “What’s the matter with you?” to “What matters to you?” Children have been boldly displaying their answers on posters during their stay, and we’ve been amazed by what we’ve heard. The answers are often deeply personal and frequently unexpected.

How It Began

It all started with a 14-year-old boy, who joked that he would make a sign to tell our staff to stop waking him at 6:30 AM for the breakfast that he never ate. He said he’d write it in six different languages just to be sure we understood.

It was a simple thing, but it really mattered to him.

We had heard about a wonderful team in Scotland led by Jen Rogers, a pediatric nurse, who had brought the “What matters to you?” idea to children at the Royal Alexandra Hospital in Paisley (and then spread it to Yorkhill Children’s Hospital in Glasgow). Their teams found that simply giving a child a voice could make a huge difference, and now many Scottish hospitals have taken the concept on board.

So we decided to try it at Imperial College.

What Matters to Our Kids

Some responses taught us about children’s journeys in hospital: ten-year-old Amelia* suffered from anorexia and anxiety. She told us, “The doctors considered my feelings and let me go home for a while.” Fifteen-year-old Jack asked that teenagers have space away from the younger children. “Put the babies in a separate room from teenagers,” he requested. “Babies make noise.”

Other children have shed light on deeper issues that concern them. Sara told us, “What matters to me? My life, my goal to strive, my health, my hospital. What matters to me? The world.”

Some began to use the opportunity to pass on advice. For example, two young girls made posters for the treatment room for those having blood tests.

Some responses have charmed us with their simplicity. Zak was a six-year-old Polish boy who didn’t speak English, whose mom had to leave him alone on the ward for a few hours. After giving him a poster pack, we soon discovered that “pizza” was what mattered to Zak. It was one of the few English words he knew, but it was his favorite by far.

Amongst the superheroes, dinosaurs, big sisters, and cool machines, some common themes emerged that have helped us understand what children really value in their hospital experience. Understandably, they appreciate kind and caring staff, their family being allowed to sleep overnight, toys and games, and, of course, the food.

They also see staff working hard, and don’t like emergency department delays. They appreciate the small things we do to try to improve their experience and give them a sense of control, like counting during blood taking – and the very act of asking them what matters to them.

A Three-Stage Approach

We developed a standard approach, with three steps:

  • Ask what matters.
  • Listen to what matters.
  • Do what matters.

We needed the will, the idea, and — for execution — some colored pens, paper, and staff to ask the question.

Despite its simplicity, it has taken time to embed the project in the culture of the organization. We've had to help people see it as more than extra work for already busy health care professionals.

We have tried to reach out to everyone involved in the patient’s journey, from nursing students and catering staff, to consultants and hospital directors. The nurses began to introduce parents to the idea as part of the routine admission process, and we presented some patient stories at the hospital grand round to spread the message. We have also aimed to give parents ownership, with signs around the ward reminding them to ask us for a poster pack if they hadn’t received one. We received a generous donation from our hospital charity for more supplies.

We’ve also listened to input from our patients. Following an initial pilot, we discovered that our teenage patients disliked the childish designs we originally used to promote the project. Consequently, we enlisted the help of one of the parents, a professional designer, to establish a more universally appealing brand.

Spreading Beyond Pediatrics

It’s been exciting to see our work spread beyond the pediatric setting. One of our junior doctors introduced the concept to their next placement at a local hospice, through the use of bedside whiteboards for patients. The adult medicine division at our hospital is also exploring ways to incorporate the “what matters” concept into the care of elderly patients across three hospital sites.

Being in the hospital can be a terrifying time for children and families; we have found that everyone welcomes the comfort of a fun, child-centered activity. We’ve listened to the children who’ve told us what matters to them, and it has been good for our team to learn what young patients value and what we can improve.

The next stage for us is to formalize the evaluation of this process in order to ensure that our health care delivery system is constantly responding to children’s honest needs and feedback.

A simple idea, but perhaps a symbol of a significant cultural shift of remembering to put ourselves in our patients’ shoes.

Try asking the next child you care for, “What matters to you?”

You might be surprised at the answer.

*All children’s names have been changed to protect anonymity.

 Dr. Nishma Manek and Dr. Lucy Pickard are physicians at Imperial College Healthcare in London. Dr. Pickard is also an IHI/Imperial College Healthcare Fellow.

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