“Fear is often worse than pain” – Lena Hedén wants the healthcare system to get better at listening

Thanks to a good friend who encouraged her to apply to the paediatric oncology ward, her interest in research was also sparked. For a long time, the focus in that research-driven environment was on saving lives through treatments and medications. But it was clear that not all children were thriving under the care and the compulsory treatments. Meeting with those young patients sparked a desire to bring about change. 

“When I saw children’s pain, fear, and suffering, I felt that there had to be a better way to do this. I wanted to find better ways to actually provide relief in these situations, and I had the opportunity to develop my research project alongside some very talented and knowledgeable advisors,” said Lena Hedén, Professor of Caring Science.

That became the starting point for a research career focused on interventions: testing, evaluating, and developing approaches that actually work in healthcare. 

A tenacious problem-solver

Driven by a strong desire to improve healthcare and make a difference, she describes herself as a problem-solver, analytical, competitive, and determined. 

“If I’m in a race, I might say I don’t care about the time, but of course I keep an eye on it. I want to do well—preferably better than my competitors…”

Does it feel hard to lose?
“Not if I'm competing with the kids. But with adults, sure! If you don't reach your goal, it's a waste of time (laughter).”

Fear is worse than pain

“Children are not a homogeneous group," Lena Hedén emphasises. No two four-year-olds are alike—and the differences between a two-year-old and a seventeen-year-old are, of course, enormous. 

“We’re pretty good at relieving pain. But we aren't always very good at alleviating fear—we might not even notice it.  "And often, it's the fear of pain that's the biggest problem," she said.

Research has therefore increasingly focused on communication and on understanding children's emotions.

Studies show that in many needle procedures, the discomfort is actually greater than the pain itself, especially in younger children. Lena Hedén’s research has helped transform the way healthcare professionals work, in part by better preparing children for treatments and actively involving them, but also distraction for example, by blowing soap bubbles.

“One key is to ask the child, for example, to rate on a scale how much it hurts. Kids are really good at that. And the mere fact that the nurse asks the question shows that they are interested—it helps build a relation.”

In recent years, the insights gained from Lena Hedén’s early research have evolved. An important lesson is that not all children want to be distracted during needle procedures.

“In paediatric care, we use distraction techniques a lot. For example, we encourage children to look away. But it never felt quite right. Not all children want to be distracted; they want to watch and be in control. My doctoral student Ida Kleye was able to explore this line of research and demonstrate that when children are allowed to choose how they want to handle their needle procedure, their fear and pain are reduced.”

The risk of missing vital symptoms

Lena Hedén is currently the principal investigator for one part of the research project "The Patient's First Contact" (PINPOINT), which studies how patients are treated during their initial healthcare encounters. The project focuses specifically on the communication of negative emotions such as anxiety and fear, as well as how these expressions are perceived and addressed. After all, even adults can sometimes have trouble expressing what they want and how they feel. 

“Adults might not say outright that they’re afraid of cancer; they might just drop a hint. Sometimes the most important things are said on the way out of the examination room. If we don't interpret the patient's signals correctly, there is a risk that they will go home and, in the worst case, become seriously ill. Then we might miss vital symptoms," said Lena Hedén. 

For some time now, she has served as the research area representative for the “Human Perspective in Care” research area at the University of Borås, alongside Maria Wolmesjö, Professor of Social Work. 

What challenges do you see in the future in your research area?
“The challenge is that we need to collaborate more, both across disciplines and across regions, nationally and, ideally, internationally as well. Implementing effective methods in healthcare. As researchers, we must continually work to maintain trust in science through transparency and traceability. Last but not least, the challenge is the growing competition for research funding. This is particularly true for research involving children and adolescents, who do not have a strong enough voice in this context despite the law on participation.”

What advice would you give to early-career researchers?
“The world of research has its ups and downs, and you have to be able to handle getting rejected by journals and research funders—but then bounce back! To feel that you can be passionate about your field over a long period of time—that’s a good thing. On the other hand, if you feel like something isn't quite right, it might be better to hold off on the project for now. It is essential to be systematic and clear in your writing, to stay on track, and to remain humble about your results. Writing is a craft.”

Learning every step of the way

In addition to her research, Lena Hedén is a dedicated teacher and mentor. The creativity and problem-solving skills she used as a paediatric nurse come in handy here as well.

“In teaching, this might involve sharing an experience—sometimes one that didn’t turn out so great. To show that it's okay to make mistakes and to learn from them. As a nurse, you learn to adapt and tailor your approach—to handle different situations. We can be overcome with grief in one room and, ten minutes later, find joy in another.” 

Read more 

Lena Hedén contact page
Academic Ceremony
Research area: The Human Perspective in Care