The pivotal role of parents in pain care: Improving how we care for children’s pain

Joan Simons, with blonde hair

In her inaugural lecture, on Thursday 12 June 2025, Professor Joan Simons, Head of School for Health, Wellbeing and Social Care in The Open University's Faculty of Wellbeing, Education and Language Studies, focused on how her experience as a burns nurse instigated a career long interest on improving the management of children’s pain in hospital.

Her research has provided insight into the barriers encountered by parents and nurses in involving parents in the management of their child’s pain in hospital. The findings have been drawn together to identify a way forward to improve the management of children's pain by providing insights and support to both nurses and parents.

Klaus-Dieter Rossade: Good evening and thank you for joining us for another lecture in our inaugural lecture series. I'm Professor Klaus-Dieter Rossade, Executive Dean in the Faculty of Wellbeing, Education and Language Studies here at The Open University. I'm privileged to be hosting one of our inaugural lectures, part of a series which showcases our research, teaching and knowledge exchange portfolio.

Today, we'll hear from Professor Joan Simons. She's Head of School for Health, Wellbeing and Social Care at The Open University, in the Faculty of Wellbeing, Education and Language Studies. Her inaugural lecture will focus on how her experience as a burns nurse instigated a career-long interest on improving the management of children's pain in hospital.

But before we begin, some housekeeping. The lecture will be followed by a Q&A session and then we'll celebrate with refreshments downstairs for anyone in the theatre. For anyone in the audience using the X, formerly Twitter, platform please feel free to post using the #OUtalks displayed and tagging @Open University and let the world join us today. For members of our audience joining us via YouTube, please use the email address provided and keep your comments and questions brief so we can address them during the Q&A session.

Now it's time to introduce Professor Joan Simons. Joan has worked in higher education for over 30 years and 20 years in leadership and management roles. Her background is adult education, management, leadership and coaching, as well as adult and children's nursing, burns nursing, and community health and pain management research. Her doctoral thesis in 2000 highlighted the poor communication between nurses and parents in relation to the child's pain, reporting on high levels of pain experienced by children in hospital. Numerous studies at the time reported similar findings for children experiencing unnecessary pain in hospital. A key finding from Professor Simon's continuing research is that when parents are empowered to be involved in their child's pain, their child's pain management improves. This finding has influenced Professor Simon's approach to her work since, which has involved designing a framework for the effective management of children's pain in hospital. The focus this evening will be on four studies conducted over a period of 14 years. It now gives me great pleasure to introduce Professor Joan Simons. 

Joan Simons:  Thank you, Klaus-Dieter, for that very nice introduction and welcome everybody, friends, family, colleagues, students online and more colleagues. I don't think I've ever in my career ever said that to an audience, friends, family and colleagues. I have 40 minutes and I have to be very spot on with the timing and Helene is going to wave at me if I veer off the timing. This evening I'm going to present to you, as Klaus-Dieter said, four studies and they're all linked one after another. I'm also going to demonstrate to you three pivotal moments across my career. I have two role models I want to share with you and finally a take-home thought, and thank you to my husband for bringing my glasses.

My first role model was my mother, and I have four sisters and two brothers and a niece in the audience. So I'm going to say ‘my mother’ even though I know she's ‘our mother’, okay, or was, sadly our late mother. This was my mother about the age of 16 and her whole life ahead of her. When she was thinking of a career she chose primary school teaching and this is what she entered into. But of course, when she got married in 1955 to my father, at the time there was no married women that could actually work, so by getting married you gave up your job, which is quite sad really because she was a fantastic mother, very intelligent and ambitious for all her children. When she settled down to having a family, she didn't do anything by half, and this is the family she had. In here, and I'm sure there's some people in the audience cringing, saying, “Why did you use that photograph?” and here I am and this is 1978. I'm standing next to my late sister, Sarah, and we're both wearing our aprons from home economics class. That was my mother's ambitions for her family. 

So starting nursing. Needless to say with a family like that and the ambitions that my mother had for us all, she was on a mission to get us all launched and independent in the world. When it came to, this would be the early 1980s, she sent off for a form to apply for nursing in Dublin that she gave to my younger sister, Phyl, who couldn't make tonight. Phyl just said to me, “Do you want this?” because she didn't want it, no way. I thought, “Fine, I'll try it.” I luckily got an interview. That was in 1983. I thought it was adult nursing but it actually happened to be adult and children's nursing, which was a bit of luck. You can see here that this wasn't a grand plan that got me where I am today. I went for the interview, no follow up at all, that was July, at end of the year, nothing. So in the meantime I decided I still did want to do nursing and I got a place in London. I was going to start in September 1984. I broke the news to my then boyfriend, Tom, that I would be going to London to nurse. There wasn't a lot he could say about it, unfortunately.

So, a student nurse in 1984. The following year, February, out of the blue, the Dublin Nursing School wrote and said, “There's been a cancellation, start in six weeks.” so I did. Here I am in 1984 looking very po-faced I have to say, and that was because we were always told you cannot smile if you're having a passport photograph. But what this very grubby form says is, ‘The above named is entitled to meals free of charge from April 16th to May 27th 1984.’ That was because for the first six weeks, for some reason, we got no pay. Obviously students these days don't get pay, but we had a bursary for the four years we were doing our nurse training, but for the first six weeks we got no pay, but they fed us.
Right, so moving on to 1988 which was a very pivotal year in my life, and recession hit and my mother again found that there was an ad in the local paper, and she said that Stoke Mandeville Hospital were recruiting in a hotel in Dublin so I told my friends. Thank you very much, Dara, Anne, and Maria for coming over for this evening, and we all went in, the whole eight of us, and we all were offered a job in Stoke Mandeville. That was international recruitment doing very nicely.Here we all are in 1988 dual-qualified in children's and adults nursing. We call ourselves the Blanchettes because we did our nursing training in Blanchardstown in Dublin. 

What was going on in the world in 1988? Margaret Thatcher became the longest-serving 20th century British Prime Minister, moving quickly on. In Coronation Street, Mavis married Derek. In Neighbours, more exciting, Scott and Charlene, aka Kylie, got married, and Molly Malone's statue was unveiled in Dublin. In my life, I qualified as an adult nurse and a children's nurse. As I said earlier, there were no jobs. When I said to Tom, “I am going to have to go to England to get a job.”, he said, “Well I'm coming too.” The following year we got married, and I moved to work in Stoke Mandeville. That's how I got to be a nurse, and I'll start now with regard to how I got into becoming interested in pain management. 

So four linked pain studies but one thing I really have to stress at this point in time is everything I've done in relation to any of these pain studies I haven't done on my own, I've done them with lots of other people, fabulous colleagues who've been generous with their time, and I would say everything I've done was standing on the shoulders of giants. One of the things it's important to point out here is that in the ‘80s when I started my nursing career, the state of play in relation to pain studies in children was such that there was a belief that in neonates their nervous systems weren't well enough developed to need painkillers of any sort, and so operations and anaesthetics were given without any painkillers. So babies were being operated on believing that they didn't perceive pain. Now we are all shocked by that today 40 odd years on, but that was the state of play. There has been massive amounts of studies in pain since then. 

As I said I started in Stoke Mandeville and it was quite a shock to start looking after children with burns. I just happened to land on a ward that was the Burns and Plastics Children's Ward and we had a very strict, I would say, burns consultant. Every Tuesday morning at 9 o'clock the round would start and every child who had a burns dressing had to have it down. Now some of these dressings would be like full leg dressings that would have to be soaked in a bath, very delicately removed, very, very painful. I was completely out of my depth even though as a newly qualified staff nurse after four weeks I would have been in charge. Ladies, you would know, in every shift that I worked I was running the ward. Needless to say, I was out of my depth and I wasn't very good at managing these children's pain. Roll forward to doing my doctoral studies. One of the things I thought I would focus on was, because I knew the pain wasn't being managed well. Studies at the time were highlighting that pain wasn't being managed well. If you think of what was going on at the time it was sort of like an evolution in pain studies, finding out how to do things better. I had this idea that if I could find parents who were involved in the management of their child's pain post-operatively, I would find good pain management and we could learn from that. So the question I wanted to ask was, ‘What's the benefit of parents' involvement in the management of their child's pain?’ I am jumping here forward, so hope you're jumping with me. 

This is the year 2000. This was the doctoral thesis that I submitted in 2000. What I had done was I'd interviewed 20 parents in Great Ormond Street. I then found the 20 nurses who looked after the children of those 20 parents. I tried to with these matched pairs, ask similar questions so I could compare. I said to the parents, “Were you involved in your child's pain care?” and they said, “I heard what was going on.” I thought, “That’s not involvement.” and 14 out of the 20 children had moderate to severe pain, and one child had the worst pain of his life. When I said, and I had to ask this quite gently because these are parents in hospital, they're stressed, their children are going through surgical procedures. I said, “Did you let the nurse know when your child had pain?” They said, “I didn't want to bother her.” I was really puzzled by this and I was thinking, “Why would you sit by the bed with your child in pain and a nurse who wants to know not being told?” I was very puzzled by that. Then I asked the nurses, “Are parents involved in their child's pain care?” They said, “They're always here.” I thought, “Hmm that's not answering my question...” but I couldn't really say much. Then I said, “If a child was in pain would their parent let you know?” “Absolutely.” So there's something going on here. Parents are saying, “I wouldn't dream of bothering the nurse.” and nurses are saying, “They would absolutely tell me.” I was quite puzzled by this. 

Now going back to my personal life, Tom and I had become parents and these gorgeous two are sitting in the back row. They're not quite recognisable from this photograph, but this is January 2000. Clodagh is two and Saoirse was five months old. This was around the time I was trying to do this data analysis. A few months later I ended up with this very pivotal moment in my thinking, staying overnight in hospital. Clodagh had had an asthmatic attack and ended up at 2.00 in the morning in hospital. She was fine. I didn't get much sleep. I think I slept in my clothes. I didn't get anything to eat, but I knew I was going home, I knew everyone on the ward and I didn't ask for anything, where I could wash, where I could eat, because I knew I was going home. The very nice medical consultant the next morning came around to check on Clodagh and said, “You can go home.” He said to her, “Your mummy looks tired.” I felt like I'd been dragged through a bush backwards. It was just that feeling of I've had the insight from the other side. Now I feel bad about that because it was really a moment of clarity for me, but how many people don't get that moment of clarity to understand what's going on in their research studies? It gave me the tiny insight of what parents at that point in time were telling me. They were saying, “I didn't want to bother nurses” and now I understood in a tiny, tiny sort of little bit of an instance in my life. I'm not sure this is Phillip Darbyshire’s work, so I hope I'm not quoting him wrongly, but there's been work done that describes parents in hospital as ‘Living in someone's workplace’. I think it so nicely captures the difficulty for a parent in hospital. If you think of the likes of me or many of us here, we work in an office. Imagine if you turned up to work one day and there's somebody on a bed on the floor and they quite legitimately can belong there and they've slept there all night, not much sleep actually, and you're there saying, “Oh, hi.” and you have to get on with your work. That's how alien it must be for parents to actually sleep in somebody else's workplace.

Pivotal moment number two. Again, I'm going back a little bit. I was very fortunate to become a Senior Nursing Research Fellow at the Institute of Child Health. This was working with amazing people like Professor Maria Fitzgerald, Professor Linda Franck who had set up the first ever Children's Pain Research Centre in the Institute of Child Health. Along with that came the fabulous opportunity to be based in the Pain Control Team in Great Ormond Street, and this is where I met Jennie Craske. I've worked with Jennie many times since, and I believe Jennie is online tonight. This was a big breakthrough for me and a huge help. Then in the next 10 years or so I was working on a number of projects looking at how to improve the management of children's pain, I worked with Louise McDonald in that team and we introduced validated pain tools across Great Ormond Street Hospital. We interviewed children's nurses on their views on pain management, and we looked at prescription errors in relation to administration of pain to children in hospital. 

Along with this I would have to say my second role model is Professor Bernie Carter and Bernie is in the audience. Thank you, Bernie, for coming this evening. One person I really admired was Bernie who was the first Professor of Children's Nursing and I really admired Bernie's work and had used it many times in my teaching. Bernie had published the first book on children's pain in 1994. Then I was lucky enough to work with Bernie on a second book and this is it here, ‘Stories of Children's Pain’, which involved collecting stories from nurses, parents, children and young people and poems as well and drawings, and using them as a point to then relate it to the clinical practice and good practice to help with children with pain. As I was working with Bernie on this, I was saying to Bernie how difficult it was to get funding for research studies and it's always been difficult, I've never found it easy, but Bernie came up with this suggestion of trying for a Travel Scholarship. With some amazing help from Bernie we set up contacts in Stockholm in Sweden and Sydney, Australia and I had the contact with Jennie in Alder Hey Hospital in Liverpool. I went to these three different areas. What I wanted to do, because at this point we'd moved forward from the poor tiny babies being operated on with no pain relief, to understanding more but the focus seemed to have been on what was wrong about pain management, finding how bad it was and trying to look at what we could do differently. I thought, “I'm sitting in a Pain Control Team where I can see they're doing fabulous things.” They would go out every morning and do a ward round and just sort everybody out for pain and they’d do the same again in the afternoon. I could see that there was this dichotomy between what I was reading in the nursing journals, and what I was seeing in practice. I thought, “There has to be a way of picking the brains of people who know how to do it really well and maybe then we could turn things around that way.” So I came upon this notion of Appreciative Inquiry. This was work by David Copperrider who was a psychology student, I believe. He wanted to look at what in a system works and how can you learn for what in a system works. This is what he called Appreciative Inquiry. When I went to Sweden, one of the things that stood out was nurses there were saying to me, “Empowered parents make nurses raise their game in managing pain.”  This was a palpable difference in the status between parents and healthcare professionals. That planted a seed and then I obviously built on that. 

The first study was from that Florence Nightingale Foundation Travel Scholarship. What I did, as I said, I went to these three areas of excellence to discover the innovations and the progress. I interviewed 28 practitioners across Liverpool, Stockholm and Sydney and this is what came out of it. The summary of all those 28 practitioners telling me about the innovations they had put in place, things that worked, things that they found were effective was that if you have distributed pain leadership where everybody in the whole team, no matter what level or seniority, knows what they're doing and are leading on pain management with vision, that leads to effective pain management with less stress, delivered with confidence and an individual approach to the child and parent and raising parents’ expectations of effective pain management. As I said I'm rattling through this. The second study. The second study was funded by WellChild, and this is the national charity for sick children. Since then WellChild have re-branded themselves. They have just called themselves WellChild since then. This was a study I did with Bernie and Jennie. A fabulous group that we tapped into was Paediatric Pain Travelling Club. This is just the most amazing group of pain practitioners across the UK and Ireland. It has I think about 140 in this group and they represent children's wards, children's hospitals, children's pain teams, anesthetists, pain consultants across all of the UK. We tapped into that group and interviewed 43 of them, because we wanted to check if those five elements that we'd found were actually useful, practical, and manageable. We interviewed 17 nurses, that was in focus groups. Then face-to-face and remote interviews with another 26 pain specialists across 17 teams across the UK and Ireland. The key question was, ‘Is this practical as the framework? Would it work?’

This is what we came up with. You can see there that the four central boxes are the centre of this framework. Again, effective leadership when you have effective leadership creating knowledgeable and confident practitioners. Because what we were told, what we heard, was that when nurses aren't confident they don't give as much pain medication as they should or could. If they were knowledgeable, it would lead to more confidence, it would lead to better pain care. But to have the knowledge, you needed to be able to support staff with relevant practice guidelines. So protocols, and there's been amazing protocols developed over the years in relation to, for example, tonsillectomy. Tonsillectomy used to be such a difficult thing to deal with pain-wise, when a child was post-tonsillectomy, but now there's very well-developed effective protocols, that's just an example. Then even though you have the pain protocols, you don't want everyone to be treated exactly the same because children are different. There are studies now that even say genders are different, cultures are different, so there's a whole gamut of differences. So even though you have the protocol, it needs to be adapted to the individual child and family. Then empowering the parent to be effectively involved. I think if you think about that parent who's usually resident with their child, why wouldn't they be involved? That's the child that they've brought into hospital, that they're taking home from hospital and that they actually are everything to, why wouldn't they be involved in their child's pain? Going back to the trigger from the interviews in Sweden, where when parents are involved, nurses raise their game. 

What the 42 practitioners that we actually interviewed came up with as well as this, was some challenges. They were saying that the main challenges is the need to make pain management as important as safety. Now of course, and you'll hear I've got three animations, three short little videos I want to show you, and one of the things that's really obvious at times is that pain isn't always the priority. There's lots and lots of priorities in the nurses any given shift, but pain needs to be a priority to be dealt with effectively and one of the consultants, that’s the (C), was saying it should be as important as safety. A shift in culture, mindset and working practices is needed, all of which would help raise expectations about pain management if you work in a culture where nobody feels it's acceptable for a child or young person to be in pain. Finally, and this was a suggestion but it is a challenge, is mandatory pain education, focusing on models of care, communication, speaking to the family, the explanation about things, the documentation. If you remember in the framework, knowledge led to confidence, led to better pain care. You're going to have a break from me for three minutes and this is the first animation. These were developed with a very skilled production company called Mistermunro, so James Munro has worked on each of these. Here's that first one. 

[Video – Pain Framework Animation]

“When children are in hospital managing any pain they experience is essential, but it's not always done effectively. Many parents leaving hospital report that their child experienced a lot of pain during their stay, but they also feel positive about the care they received, which means something isn't working. Following extensive research with pain specialists across the UK and internationally, we've developed a framework for delivering effective pain management for children. There are four components. The first is creating knowledgeable, confident practitioners. Many nurses can feel nervous about giving too much pain medicine and when nurses are not feeling confident they may administer less than what's been prescribed to be on the safe side. The second element is the support given to those staff. Making sure they have access to relevant protocols ensures that they rely less on their own judgement and more on proven best practice. Pain protocols with well-evidenced guidelines for predictable scenarios are usually created by dedicated teams after a lot of hard work. But when the whole hospital implements them, they are shown to make effective pain management easier to achieve. Thirdly, nurses need to involve parents and treat them as partners, after all, they have unique expertise when it comes to their child. But parents are often reluctant to point out that their child's pain is not going away, so they need to be encouraged to speak up. Practitioners want to help, but if they don't know a child is in pain, they can't do anything about it. Lastly, it's important to take an individual approach to both the child and their family. Talking and listening to each child and finding out about their experience, understanding, fears, likes and dislikes, makes it more likely that their pain can be managed effectively. To be effective, all four components need to happen with everyone at all levels playing their part. If all practitioners start using this framework together it can contribute to managing children's pain a lot more effectively.”

We had talked to practitioners, we talked to nurses, doctors and we thought, “Actually we haven't talked to parents.” So the third study I'll talk to you about today was a follow-on study with parents which I did with Dr Linda Plowright-Pepper and this is one that was funded by The Open University. 

We asked parents what it feels like to see your child in pain. Parents told us they felt helpless, intimidated, nervous, worried, not in control. Remember parents usually feel the need to be in control, anxious, guilty, ‘My nerves are shot.’ ‘You feel you're letting your child down if they're in pain.’ ‘I feel a bit hopeless.’ Parents suggested you need to be mentally prepared as a parent before coming into hospital with your child, but as they are the parents they feel responsible for their child and for their child's pain. You can imagine there's a lot of guilt going on there. 

What do we do with this? We pulled together another parent animation. I'll tell you at the end what we're going to do with this animation. We addressed three key interlinked issues. The parents we interviewed were parents who had a lot of experience of being in hospital with their child who had been in pain, and so they had tips and insights to share for other parents. The plan with this animation is to use it with other parents to try and get them to believe it is okay to ask when your child's in pain. The importance of open and clear communication between parents and nurses, and, of course, if you think about it, this was a few years ago and this relates directly to what I was saying I found in 2000. I started my doctoral studies in 1996, so this issue that I came across at that point in time was still needing to be looked at. We looked at the need for parents to build a relationship with nurses in which they felt confident. We talked about nurses needing to feel confident, but parents need to feel confident to be able to talk to nurses to get the help for their child when they're in pain and they need to provide parents with information about their child's pain management. 

[Video – Animation for Parents]

“Many children will need to stay in hospital at some point in their lives. For most, the experience won't have a lasting impact, but for some it can be an anxious time. One reason for this can be unrelieved pain. We're working with parents, doctors and nurses to improve this. When a child in hospital has pain a few things usually need to happen for it to be managed effectively. The child needs to tell someone they have pain. That could be their nurse or doctor, parent or carer. If the nurse or doctor isn't aware of the child's pain, the parent may need to tell them about it. Sometimes parents don't feel comfortable asking a nurse or doctor for pain medication. Parents told us that in this situation they feel nervous or worried about asking for help. They worried about seeming too demanding and some said that you need to be confident to approach the nurses and doctors. Others said that they felt lost in hospital and worried they would look foolish if they didn't understand their child's treatment, and when their child was in pain they hesitated to bother nurses and doctors as they are so busy. But we also spoke to parents who approached the nurse or doctor caring for their child and received the help they needed to manage their pain. These parents described being told by nurses and doctors, “You can't bother us too much.” and, “If you need anything, just come and get us.” This meant they could approach the nurse or doctor who then helped with their child's pain. We also spoke to nurses and doctors about encouraging parents to ask for help. They told us they want to work with parents to manage their child's pain. If they haven't picked up on it, they want parents to tell them. They said that parents know their own child best and how they deal with pain. If you are in hospital with your child and they are in pain, remember the nurse or doctor wants to make your child comfortable. They need to know about it so they can help. If you're not sure what to say to the nurse or doctor, you could start with some of the following. “I don't think my child's pain medicine is working properly.” “I think my child is still uncomfortable.” “I don't know why they are getting pain.” “I want to help my child to cope, but don't know how.” “I don't understand how the medicine is supposed to work.” By working together nurses, doctors and parents can reduce the number of children who experience pain during a hospital stay.

So remember… 

You know your child better than anyone and can be their voice.  

No question is a silly question and it’s important to ask if you don’t understand. 

The doctors and nurses are there to help and want to make your child as comfortable as possible.”

That's what we heard from parents and that was the message and the animation we put together which we will be sharing more with parents. 

The final study was cognitive interviews with nurses, parents and children and young people. This was funded by The General Nursing Council Trust. 

As you can see there was a repetition of findings. Parents weren't keen to ask a nurse, not feeling confident. Nurses wanted parents to talk to them, but they weren't talking to them necessarily. So Jennie Craske, who I mentioned earlier, came up with this fabulous idea of using cognitive interviews, which I hadn't come across before. We had to go off and get trained in cognitive interviews. The idea of cognitive interviews is that you ask somebody to do a thinking-aloud scenario. You give them an example from practice and say, “This child was in with it’s mother, this happened, they were left in pain, the nurse was not around, what do you think?” Then they actually, in a thinking-aloud scenario, say, “If I was in that position I would be thinking, ‘Oh that's such a pity that that parent didn't tell me that.’ I'd be imagining that that parent would be saying, ‘Why didn't the nurse come and ask me?’” So we got a little bit more underneath the actions of parents and nurses into what they were thinking and in relation to their values and beliefs. They're designed to gain insight into an individual's thinking and values that explains their behaviour. The data analysis when you look through it you're looking to see are there cognitive errors and this is just examples of flawed judgments, inaccurate decisions, and you might even describe them as misunderstandings between the two. 

For this study we interviewed 11 nurses, 8 parents who just happened to be mothers, we would have been delighted to hear from fathers, but it was mothers, and four children and young people and we used practice-based scenarios. We came across what were the obstacles for parents' involvement in pain. Now remember my doctoral thesis wanted to identify parents who were involved, and I couldn't. Here we are many years later still trying to find it. Parents of children in hospital find that the busyness of a nurse acts as a deterrent to them approaching a nurse even when their child is in pain. That's exactly like what I had found many years earlier. Parents are saying, “It's just that uncomfortableness of going up asking for help because you're in that environment.” Remember the parent living in somebody's work environment. “You're in the hospital environment and they're the experts at the end of the day.” “You see how busy nurses are and you think of all the other children that they're trying to look after.” “It wouldn't be my first port of call because I know they're busy but I'd have to do it. You do feel like you're bothering them. Your child is in pain and you do feel like you're bothering them.” Then many, many times they said to us what an overstretched and busy nurse looks like. 

They said, “You can tell when a nurse is overstretched. She doesn't smile, she becomes unapproachable.” “She doesn't want to have chit-chat, she doesn't want to do that because she's almost certainly chasing her tail and trying to catch up.” “And if I notice that this is what's happening it makes me a little bit reluctant to ask for what my young person may need.” So here's a parent and has a busy nurse in front of them, even knowing that they could ask but because the nurse is so busy they're thinking this is not the right moment. So they're using their judgment, they're making an assumption, they're making an assessment and even though they want something for their child in pain, in front of a busy nurse they don't ask.
We found lots of contradictions. Nurses told us that they recognise that it's not always easy to approach a nurse, but when the ward gets busy, they rely on parents coming to tell them if their child is in pain. Looking at the previous quote from that, those three sections were for one parent, what they're saying is, “When the nurse is busy I wouldn't interrupt the nurse.” But what the nurse is actually saying is, “When we're busy that's when we need parents to talk to us.” Nurses agreed that when a parent isn't confident, they can hesitate or delay getting help from a nurse when their child is in pain. But when a parent waits a long time without managing to get help for their child in pain, they can become anxious, which can lead to a tense encounter with the nurse. We heard nurses talking about parents shouting at them, and I just couldn't understand that till we got into the depths of it. 

Parents dealing with their child's pain, they explained their actions. In the absence of being able to find the nurse or approach a busy nurse, they get on with trying to help their child. “So, I would try and soothe my child. I would try distraction techniques, engage them in some sort of small play to try and see if there's enough to distract them from one thing or another.” 

So our cognitive errors. If you remember that's what we tried to do in cognitive interviewing to find the misunderstandings. This is just a summary of what you just heard. When nurses are busy they expect parents to find them, but when parents see that nurses are busy it's a deterrent to them approaching the nurse. Nurses are aware of parents' reluctance to interrupt them if they're busy. “I always find it quite frustrating because I think we are busy but that's because we expect the parents to tell us if there's any issues. It's not their problem if we're busy.” “There'll always be time made for stuff or there'll be delegation that we can do in order to make sure if we're not able to provide to feel like we're there.” “I feel bad for them that they feel like we're too busy to spend time with them whereas that's often not the case.” That's our first misunderstanding. 

Our second one, parents expect nurses to ask about their child's pain but if nurses are busy and the parent doesn't ask about the pain relief, nurses can mistakenly assume that that child doesn't have pain. Because if you think about it they're relying on the parent who is resident with their child, they are probably 24/7 and sitting beside their child in pain. They assume that that parent will say, “Oh do you mind, still got a lot of pain here.” When the parent doesn't do that, they assume the child doesn't have pain. We were told that sometimes when a nurse is busy, they may quickly ask, “Everything OK?” which makes parents feel that the nurse hasn't the time to stop, so replies, “Yeah, fine.” You know well that, “Yeah, fine.” is not so fine, even though they would have liked to explain that their child needed something for pain. This situation doesn't give the parent the opportunity they need to have the time with the nurse.

You're not going to hear the next animation you've heard two already. The “So What?” The thing we always do in education is we're always saying to poor students, “So what? You've done this, where's your critical analysis, so what?” The “So What?” here is the question, “What have we done with the information? 

What we've done, and this is our fabulous Open University OpenLearn platform, and this is just the most amazing place in the whole world, and you can get lost in it for hours. All the courses are completely free and available worldwide. We've developed two pain courses, one very imaginatively called ‘Promoting the effective management of children's pain’ and ‘part 2. Launched last year, we've had more than 300 complete the course and we've got lots of active learners there as well. But really importantly I wanted to share with you some feedback so far. We've asked in the evaluation, “What are the key learning points?” and these are nurses doing these courses. The importance of understanding parents’ viewpoint. The reluctance of parents to bother nurses and that parents feel that not understanding aspects of their child's care is a negative reflection on themselves. These are mostly qualified nurses saying these things which is interesting and in a way it's great that that's their key learning point, but you kind of think maybe they should have known that before. “What will you do differently?” “I will be more aware of the need to empower parents.” But this is the one I think is really hard, “To ensure that I never appear too busy.” These nurses are flat out, day in, day out, and so to never appear too busy is going to be a challenge and, “To provide adequate information for families to feel confident and to feel empowered.” Next steps. We are going to design a leaflet. We are in the process of doing that where parents can access the QR code to the animation. 

I would like to acknowledge a huge amount of help that I've actually got from Karen Littleton to become a professor. I don't think I would be standing here if it hadn't been for Karen's help. Linda Plowright-Pepper, The Open University, all the healthcare professionals and parents and children and young people who are involved in our studies, the Paediatric Pain Travelling Club and the OU Research and Communications team who are fabulous people. 

Take home thought. Pain is invisible. We could all be sitting here in pain. Nobody can see us. It has to be communicated to make it known. So that's your take-home thought. Thank you very much for listening.

Klaus-Dieter:  Thank you Joan for an amazing lecture. I'm still processing. Now it's time to hear from you in the lecture theatre and online with any questions and comments that this talk has raised for you. Joan, please join me to the seating area. Time for questions. That microphone's working. Please wait until the moving mic has reached you and then introduce yourself, where you're from and who you are and where you're from, and please keep the questions short so that we can answer as many as possible. We also invite comments from our online audience using the email provided on the slide showing. So, questions?

Harry:  Hi, my name's Harry. I'm from London, Joan's future son-in-law. Firstly, huge congratulations Joan on a fantastic lecture and also what is obviously an incredible career. The question I have for you is, you've obviously come away from this with some recommendations on how pain management can be made significantly better in the UK from a training perspective for medical professionals and mostly from a communications perspective from parents to said medical professionals. How well is that being taken up around the UK and if the answer is ‘not very well’, what needs to change in order to make it better disseminated around the UK?  

Joan:  That's a great question, Harry. You better play your cards right to become a future son-in-law. It's an interesting one and it is at the heart of the matter. One of the things that has been suggested is mandatory education, which sounds fine, but you want more of a will that actually people have the time to do it. But a very interesting thing that came up was that nurses said pain is often not the priority and of course it is invisible. So that's a real difficult thing. One of the things they said was a priority was recording fluid balance. I thought, “Why? Why on earth would you do fluid balance, you know, how much somebody drank and how much they wee’d and whatever. Why would you put that over pain?” The reason was fluid balance was audited. It goes against my principles as wanting to educate people and to have it as a priority, but if pain management was auditable, it would immediately raise the priority. We know that nurses are very stretched, and every single nurse said, “We do not want to leave a child in pain.” But they are getting left in pain because they're stretched in so many ways and they subliminally believe that that child has a parent by the bed, so they're okay and that parent will come and tell me if they've got pain. I hope that answers your question.

Vic: Vic Nicholas, Associate Dean in the STEM faculty at The Open University. Joan, I thought your talk was amazing. It was so interesting to think about a child’s pain and particularly the role of parents being able to advocate. I wonder if some of the lessons that you have learned and the work that you're planning on communicating out to parents and children is also relevant to adult care, particularly in settings where you often have an accompanying adult, like geriatric care. Are there parallels to those sorts of settings rather than just being to do with childcare settings?

Joan: Yes it's a really good question Vic. For a long time, I think probably as I referred back to the point where there was no research in children's pain and then it grew and grew. I think for a while in the world of children's nurses, we were very anti, “Oh, that's adult pain, can't talk about that, we're talking about children.” because we have to elevate the importance of children. But maybe because I'm getting older, but I absolutely think there are parallels 100%, because if you have a vulnerable older person, the similarities and the parallels are absolutely there because if a daughter or a son comes in, because it's an adult in the bed, they want to think, “Well, I'm dealing with the adult.” but in actual fact they're a vulnerable adult. So I think there are absolutely parallels yes. 

Verina Waights:  Hi Joan, thank you, that was a really excellent talk. Verina Waights from The Open University. It makes me think in terms of nursing that maybe what we should be thinking of is when a parent comes into hospital with their child that actually there's some like little note by the child's bed that says, “If your child is in pain, please say something.” Because it kind of reminded me of some of the things we're trying to do for adults with learning difficulties or with dementia, where we're actually reliant on the advocate with them to be helping with the interpretation of pain or whatever. I don't know whether that's possible. I mean, it's quite a big ask for hospitals when they're busy, but it might make a bit more of a connection, especially for parents who are suddenly thrust into that situation. 

Joan:  Yeah, I think you're spot on Verina, and that's what we're trying to aim to do with the posters. We're working with James Munro, who did the animations, his production company, and he is going to design us a poster. What Jennie, who leads the Paediatric Pain Travelling Club who are all these pain professionals across the UK, we're going to distribute it among them. But we've had some suggestions and people have said to put the poster in the parent kitchen. Obviously that's in a children's hospital and children's wards, it might not be a parent kitchen, it might be in a particularly predominant part of the ward. But parents in hospital have a lot of time on their hands and they're sitting there sometimes bored and stressed and if they had that ability to read. Only just this week we were trying to put a title like, ‘Is your child in pain?’ So it's a trigger like, ‘Oh, maybe, I might read that because I have nothing better to do.’ and the idea would be to use some of the tips we get from the parent suggestions, it’s the words to use to ask somebody for pain relief and then a QR code to the animation. So the parents can sit in the room and think, “Oh the nurse actually does want me to tell them and I know that when they're busy they're still interested in me telling them.” and this notion, and Jennie will probably laugh when I say, Jennie being the paediatric pain nurse in the pain team in Alder Hey, was quite cross when she heard that nurses were saying, “Just grab us, just grab us.” and she says, “They will never just grab anybody.” It's that making it manageable, that message of we're busy, but we do want to know if your child has pain.

Dev Kodwani: Joan congratulations. Dev Kodwani from the Faculty of Business and Law. If I can sneak in a couple of very short questions. One is, was there a difference in the, whether it's the mother's side or parent's side and the nurse's side, cross-cultural differences? We are a diverse nation, and we've got communities from all over, different cultures. Was there a difference in certain communities, individuals, parents, more expressive and similarly nurses? Second is, in the nursing training programmes, as you know, I am an accountant so I know nothing about the nursing curriculum. But from the educational point of view, is there anything in that that trains nurses to understand the body language or the unspoken way people communicate which helps them to understand what's going on even if the parent says they are reluctant for whatever reason. So two questions, thanks.

Joan:  The second question I'll answer first, and that is, yes, nurses are definitely trained and educated in communication, but there's very, very little content in an undergraduate degree in nursing on pain. Alison Twycross did a really interesting study quite a while ago now and found that across a whole three-year, sometimes four-year programme, there's only eight hours dedicated to pain. So it's very little and there really is a need for updating and that's going back to the idea of the mandatory training. Now I listened to your first question but remind me what was the first, which was going to be quick I have to remind you Dev. 

Dev:  You know nurses and the parents from different cultures. 

Joan:  Sadly none of our studies were big enough to incorporate that, but absolutely I've come across studies that do look at culture. Because one of the hospitals where I did some of the interviews was in a very multicultural part of London. That particular pain nurse was telling me that when you have an interpreter, for example, that parent is immediately disadvantaged and there definitely is cultural differences. I think there's just another layer of vulnerability and another layer of communication obstacles really. So yes, I think a larger study Dev would actually probably be able to focus on that.

Speaker:  This is a question from Beryl Adler, who is a consultant paediatrician and the subject line is ‘Pain in non-English speaker parents.’ How do you ensure access for all?

Joan:  It's a really good question and relates very nicely to Dev's question. I think the issue there is you have to have a good translation service. I think equity is a real issue because of the availability of translation services. Large hospitals might have them, but a Children's Unit in a district general hospital won't have them and it's down to resources unfortunately.

Bernie Carter:  Thank you Joan. My name is Bernie Carter and I'm based at Edge Hill University. I'm going to try and make this comprehensible. I think one of the things that you've shown really beautifully is how we're not always getting assessment and management of children's pain right. I think one of the problems that we have is that we don't always, as nurses and as health professionals or as parents, consider the consequences of not getting it right. Because what we're learning more and more about now is the trauma and the impact of pain that's not managed, that happens on that child from that very moment that first pain isn't managed all the way through that child's life, leading to psychological impacts. Do you think that making people that are responsible for managing pain more aware of the consequences of not managing it could be a way of actually improving pain management?

Joan:  It's a really good thought and it just reminds me Bernie, and this is Bernie, my mentor. Thank you Bernie for all those mentoring years. It reminds me that that was something I would like to have fitted in. Just why bother with pain in children? You know, what are the consequences? As Bernie very nicely put it there, the devastating consequences, long-term probably, sometimes for life, of a negative pain experience in a child makes it worthwhile. I think it would definitely be an important feature of pain education. I think it's a really interesting one because we've never really looked at, I suppose in a sense you could see there's a parallel with when you do a speeding awareness course, what are the consequences of you driving too fast? For nurses, what are the consequences of that small five-year-old child with a little pale white face who was left in pain because you were too busy and the parent couldn't ask? Will they then for the rest of their life never enter hospital, never go to a medical appointment and have this distorted view of health systems? It will negatively impact their life. I think yes it's very profound. I'm glad you brought it up Bernie, and I think yes, that should definitely be included.

Natalie:  Hi Joan. My name is Natalie, and I'm a senior social worker in fostering. I was just thinking about you were saying about the parents knowing their children best, but we have a lot of children that go into hospital with injuries, and then foster carers are sent in to build a relationship with them at the time of emotional trauma and at the time of physical harm. So I'm just thinking about how they might be able to, because they're not going to know, they're not going to have that knowledge of the child to know when the child is in pain and to have that trusting relationship. I don't know if anyone's thought of that aspect, because this kind of focuses around parents, but then there's that additional barrier, like you were saying, with kind of culture about if it's somebody that they're just meeting and we're just introducing them in the hospital, how that might be considered or managed.

Joan:  Thank you, Natalie. I think that's a really important question because you've got another level of vulnerability there, haven't you? The one thing that, again, I didn't have an opportunity to talk about, because I could have talked all night about pain in children, was that there is an assumption on the part of parents that the child will tell them if they're in pain. Very often and depending on the cognitive development of the child and the stage they're at, children will assume without telling their parent that they know. I suppose in that scenario, knowing that that's possible, it would be to help the foster parents be aware of the fact that they have to ask the child if they're in pain. We use the term ‘pain’, but for a lot of children they don't understand what on earth that means. At the recent Paediatric Pain Travelling Club somebody came up to me at the end and said, “You do realise we shouldn't be using the word ‘pain’?” and I thought, “Well what do we use instead?” Of course, for children, if they graze their knee, they're sore. It can be things like a boo-boo, it can a hurt, it can be sore. I think for foster parents it's probably increasing their awareness and confidence that they can't assume a child will tell you. We all think that when a child's in pain they'll scream their head off. But having worked with children, it's the sickest, quietest little child with a pale white face, they're the ones you worry about, not the ones screaming their head off. So it's engendering in the foster parents the knowledge and confidence that they need to check in with the child.

Natalie:  Some may have been through too much to speak out.

Joan:  Exactly.

Mary:  I'll go ahead. Mine is brief. 

Joan:  This is my sister Mary, who has come all the way from Australia and was a Professor herself.

Klaus-Dieter:  Oh well, then sister Mary, of course. Oh, well, in that case. OK.

Mary:  So I've just recently retired as Professor of Midwifery and Women's Health. But one of the things that struck me about Joan's talk is the parallels. You know, the difficulties in midwives and nurses giving adequate pain relief and the fear they have of overdoing pain relief. So it's half a comment and it's half a question for the future. What can we do better when we're educating nurses and midwives to make them more aware of the need for proper pain relief and not giving half the dose because they're a little bit scared? 

Joan:  I think, and it was sort of alluded to in the first animation, that when nurses are knowledgeable, they do give more pain relief, and that has been shown in some studies and I think that goes back probably to Harry's question at the beginning, mandatory training. We make lots of things mandatory that maybe not all of us would choose to have mandatory, but if we could have mandatory training in pain management and an extension of it within the curriculum, eight hours over three years, it is not even scratching the surface.

Duncan:  Well it won't be a quick question, but anyway, thank you very much for a wonderful talk and I'll sort of reiterate what your sister said about education. I think for all new parents communicating with your baby or your youngster, say under two, is very difficult because how do you communicate with something that can't communicate to you? One of the things I would suggest is it's equally important for parents to know how to recognise whether your baby is in pain, because they can't communicate to you. When my grandson was two he was completely fluent. He could tell us exactly what was going on. He could sing, he could dance, and so on. At that point, we can communicate with him, we can ask him if he's in pain. But for a baby, it's really, really difficult. How do you cope and how do you educate people recognising those signs?

Joan:  There's been fabulous work done by Professor Linda Franck who worked with newborn babies and designed through videos an assessment tool called CRIES in assessing newborn babies as to how they actually communicated pain through crying, so it is possible. I would say I would counter the belief that a child under two can’t tell you they're in pain. 

Klaus-Dieter:  Thank you very much for this amazing lecture and it's clear from the questions this touched us on a personal level and a professional level and how could it not. Really thank you for raising, I learnt an awful lot about pain today. 

[clapping]

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