Editor’s note: Eight young pain researchers were recently selected to provide interviews, news articles, and other content as part of PRF’s Virtual Correspondents Program, which provides a science communications training experience for program participants. The following interview comes courtesy of PRF Correspondent Nicole MacKenzie. (Also see the Correspondents’ blog posts here.)
Denise Harrison recently moved from Canada to take a position as professor of nursing at the University of Melbourne, Australia. Although based at her home office since she started in her new role, she is working at establishing new partnerships, and re-establishing existing partnerships, with parents, clinicians, other researchers, and organizations with the aim of improving outcomes for babies, children, and their families. One of her first projects is to evaluate the newest Be Sweet to Babies video, highlighting best ergonomics for performing heel lance while babies are being breastfed or held skin-to-skin. Recently, Harrison spoke with PhD Correspondent Nicole MacKenzie, a PhD student at Dalhousie University, Halifax, Canada, to discuss her nursing and research career, her Be Sweet to Babies program, and much more. Below is an edited transcript of their conversation.
You’ve had an extensive career in nursing and research. What led you to pursue pain research specifically?
I was working as a neonatal intensive care nurse in a pediatric tertiary referral hospital. We had a lot of surgical babies, and their postop pain was generally managed okay. But for the procedural pain, we didn’t do anything.
One day, a procedure I saw just tipped me over the edge. A baby with a chronic lung disease had been with us for months. The baby was incredibly compromised, and he was on oxygen. We were putting an IV [intravenous line] into him with no pain management. He started crying but became very weak. Then he went a bit gray and then a bit blue. His oxygen saturation and heart rate dipped down. So we had to stop the procedure, resuscitate this poor little baby, and we still had to get this IV in with no pain management.
It was at that point that I got very mad and very sad at the same time. I said that we have to do something; this is so cruel. We nearly lost this baby because of a painful procedure that we do every day, all the time. So it was that little guy down in room 4 – I’ll never forget him – and that started me thinking about what we can do to better manage pain.
What prompted research or clinical practice to then focus on managing infant pain? And when did you begin to see this happening more routinely?
As I said, surgical pain was treated okay in the hospital where I worked, but acute procedural pain had not been looked at until I did a research study in Australia. My goal was to look at what we can do for sick surgical babies with compromised IV access.
To study those babies in a research trial is actually really difficult. All the babies in my population – they were sick, had congenital abnormalities, had surgery, and were older – were excluded from all the previous sucrose trials [where a sugar and water mixture is given to infants orally before a painful procedure, such as needle injection, to provide pain relief].
Even then, I thought, we know that sucrose works in well babies, but would it work in sick babies who are so different because they’re getting morphine? They’re not normal in terms of the way they respond to pain, and they’re not normal in terms of how sucrose works, which is to increase endogenous opioid levels [the body’s natural pain relievers]; we’ve never known that for sure, but it’s probably true. So that was my drive: to see if such a simple, inexpensive thing that could be easily implemented actually worked in sick babies, too.
I therefore conducted a blinded, randomized controlled trial, including 128 babies, and found that the babies who received sucrose, compared to water, during a heel prick had reduced crying times and lower pain scores. This was the first study to show that very small volumes of sucrose reduced pain in sick babies who had already experienced surgery, many painful procedures, and who had been on strong painkillers such as morphine in the past.
Why is it important to focus on pain management so early in life?
There are a few answers to that. One, I saw it in front of my eyes. The baby I discussed earlier had become very distressed, and we nearly lost him due to a painful procedure. So way back then, we saw that a needle prick wasn’t just a poke. It’s not right even for well babies, even though they’re not as physiologically compromised for a long time, but sick babies are. So it is important; it’s not just a little needle prick that they get over.
The other thing is the ethics of providing best pain care. We have knowledge and an ethical imperative to use it. Valeri and colleagues’ 2015 systematic review article was the first systematic review to really show that it’s the number of painful procedures in premature babies that has the strongest association with long-term adverse outcomes, such as poorer learning and other brain and behavioral outcomes.
I remember giving a presentation to midwives, and the hardest question I’ve ever had in my whole academic career and as a clinical nurse educator before then was from a midwife saying, “Well, we’ve never done anything before, so why bother now?” I found that so hard to answer. I just had to think because the immediate response is to blurt out something pretty negative, right? You’ve just got to stop when you hear that sort of question. I thought about it and said that we didn’t know the evidence before, but now we do, and we have a responsibility to use that evidence in practice. But it certainly took me aback.
Let’s transition to your Be Sweet to Babies research program because it’s an excellent example of a way to engage everyone who needs to put knowledge into practice – healthcare providers and parents especially. Could you say a little bit about this program, which has been very influential in sharing information with parents on how to manage pain in infants?
That started with my postdoc; this was when I really started to focus my own work on knowledge translation but including parents. I wanted to include parents as well as staff because we educate healthcare providers but we don’t tell parents anything, and so they don’t even know what pain management approaches to use. We started to work out how we can involve parents, and the Be Sweet to Babies program grew then. I led a knowledge synthesis project, and part of that was to develop knowledge translation tools, which was driven by my knowing that we had not included parents in our teaching and our research before; they had been excluded.
When I got back to the sick baby population, I started to implement breastfeeding for those babies when possible and safe, that is, not during their first feed but when they were already able to breastfeed. It was actually met with a lot of resistance by the staff, but the parents were so happy. They’d never heard of it, and it was so good – parents of sick babies just took to it. Again, there was evidence that parents really wanted this; it works beautifully for babies. That background, and knowing that nobody was working with parents, really drove the Be Sweet to Babies program to involve both staff and parents.
What has been your main method of sharing information about these approaches with families?
We first developed a poster with the three main procedural pain strategies that work: breastfeeding, skin-to-skin contact, and sucrose. It was really about getting that information out there in a usable way, where people could see the evidence. We spent a lot of time writing and talking and reading, but that’s not how parents necessarily take in information.
Once I began my role as the Children’s Hospital of Eastern Ontario (CHEO) Nursing Research Chair in Ottawa, I was able to put my very long-term simmering plans for videos into action. I partnered with CHEO’s Media House, which was wonderful. I partnered with mothers, with community centers to do the vaccination videos, with intensive care units to do the skin-to-skin contact and sucrose video, and with maternity centers to do the breastfeeding video. Of course, once I did these videos, it was not enough; you can’t just put things in place and hope for the best. Evaluate them!
How do you evaluate your work with the videos?
In lots of different ways. I evaluated them in specific settings, such as a neonatal intensive care unit, in terms of whether parents and staff had seen the videos before, what they thought of them, and whether they thought the videos were likely to change practice. But even then, that only gets at perceptions, and not at the question of whether they really use the knowledge.
So I also did a pilot study in the maternity ward of a general hospital. This time, the study was just targeted at parents. I certainly learned along the way that you do things with staff, but that doesn’t necessarily flow to parents, and you do things with parents, but that doesn’t necessarily flow to staff. So you’ve got to do both of them together when evaluating this type of work.
When it comes to sharing research findings with families and actually putting knowledge into practice, are there particular barriers that are blocking communication between healthcare providers and parents?
There have been in the past – we didn’t truly involve families in research. But we’ve talked about it for a while, and we’re getting better at it. You have to have family partners and patient partners [people with lived experience of pain who contribute expertise to the research process]. Having someone who is known, influential, and can reach out to families in pediatric pain is also important. The minute I got back to Australia, I established a really good partnership with Miracle Babies Foundation, a group of parents who have had premature babies, led by Melinda Cruz. I work with our national nursing groups both in Canada and in Australia. But to get a few key family members who are happy to share their voice and work with us, and for us to work with them, is a real key.
It sounds like what you’re describing is normalizing this idea of procedural pain management.
Yes. And again, a problem with focusing just on parents is that if you give them the knowledge and they get excited, like they did in my general hospital study, but then the staff won’t use that knowledge, you can set up a negative relationship. I’ve been aware of that all the time in my vaccination work. So I really encourage parents to ask their nurse and their doctor about ways parents can help – that’s the main message from my video.
One of the amazing things about your project is that it’s been translated into so many different languages.
I always thought this is knowledge that needs to be translated to everyone. Babies are babies, whether they’re born in China or Turkey or another country. Culture, race, and upbringing have an effect later on, but newborn babies are newborn babies. Breastfeeding, skin-to-skin contact, and sucrose work – end of story. Part of my drive is accessible knowledge, and that’s for both clinicians in non-English speaking countries, and also for parents.
You’ve discussed the ethics around placebo research, where one study group does not receive an active treatment but rather a placebo such as a sugar pill, in infant pain. Can you speak to what that problem is and how it can be addressed or avoided?
The principle of equipoise means that to allocate study participants to a no-treatment group, you have to have uncertainty about the intervention that you’re testing – it’s the basic principle of human research. I kept reading randomized controlled trials [RCTs] testing sucrose versus placebo in babies, but we already had that evidence. I kept asking, what about glucose? Sweet solutions are sweet solutions – they all work. But nobody had collected that information yet.
So I partnered with Mariana Bueno [Hospital for Sick Children, Toronto, Canada], and we did a systematic review of trials that tested glucose. This review showed that glucose and sucrose were both effective. So my team conducted another systematic review, which was published in Pediatrics, where we included all the studies of sweet solutions in newborn infants. We continue to argue that we should not be conducting more placebo-controlled trials of sucrose in babies. There’s enough evidence.
What do parents need to be aware of as potential participants in placebo research on infant pain?
I always felt that informed consent was not truly informed, because we’re not telling parents there’s already good evidence and that we’re just testing the evidence on a new population because we haven’t used it on that population yet. Many clinicians argue, “We don’t do it in our unit, so we need to run an RCT to prove it works in our population.” But one good thing is that the message is getting out there because there are now fewer sucrose studies being published.
What’s next for you as your work moves forward?
Our conversation has been really positive for me. It’s COVID time and Melbourne is very shut down. I haven’t been in my office since March, and I’m not going to be there until January or February; I can see this going on. So you get a bit isolated and start to lose that passion. You wonder, where’s this going? The priority is COVID, but that doesn’t mean that I can’t get out and continue the knowledge translation work. Babies are still being born and babies still receive needles. So you have to keep that passion, and you reminded me of the influence of the work.
You’ve ended on a really great point: Regardless of what’s happening in the world, pandemic or not, as you said, babies are still being born. There’s still pain. The impetus for us to want to put this knowledge out there and engage people properly doesn’t go away. Your work is a great testament to the importance of pushing that agenda forward.
Thank you.
Nicole MacKenzie is a PhD student at Dalhousie University, Halifax, Canada.