Nurses and families, side by side - Kate Robson parent coordinator at Sunnybrook NICU

Kate Robson closed the 4th Canadian Association of Neonatal Nurses National Conference in February by reflecting on her parent coordinator work with staff and families at Sunnybrook NICU, a new role begun in 2010. The presentation confirms the value of organization's hiring qualified family program coordinators with a related personal health care experience to help build staff and family partnership and it was described by a veteran SickKids NICU nurse practitioner as the standout family centered session of the conference.

Please read the text with Kate's slides (open PowerPoint presentation

My name is Kate Robson, and I’m very proud to say that I work at Sunnybrook NICU as a Parent Coordinator.

When the organizers of this conference asked if I’d be interested in speaking, I was incredibly honoured. I have to admit that I also got a bit nervous. I’m not a shy person by nature, and my job does involve a fair amount of public speaking. But to be asked to talk to a group of nurses – to people who I see as my heroes! I felt almost a bit cheeky saying yes.

But then I realized how lucky I was, and am. How many parents would love to be in my shoes right now! How many parents would love to be up here in front of you, with the opportunity to say thank you – not just on my own behalf or on behalf of my family, but on behalf of all the families you help. So that’s what I want to talk about today.

(SLIDE 2) It’s not just thank you that I want to say – that would make for a very short speech. I’d like to share a little bit of my own story, to explain exactly why I’m so grateful, and to talk about what in particular I have learned from nurses. Because while my family’s story is just one story, the experiences we had, the things we learned, the kinds of help we received, are common to many other families.

I also want to share a bit about my present role in the NICU and describe some of its benefits, and some of the challenges I encounter. There are some interesting projects I’ve been involved in that I want to share with you. And then I’d like to talk about the NICU as a land of opportunity for families – and talk about some of the things that you do in the course of your daily work that end up transforming lives for the better. And finally, I have some messages from other families that I’d like to share with you.

(SLIDE 3) So – let’s go back to where things started for my family. In 2005, my seemingly normal pregnancy went downhill very quickly, and my husband and I found ourselves parents of a very beautiful, very tiny 500 gram 25 week girl.

Our first act of faith was naming her – we gave her the names of both of our mothers because we wanted to share their strength with her, and because we didn’t want to give her our second choice names – we wanted her to know we believed she would make it. And she did!

We were in the hospital a long time with her – from May to September – and I feel like we spent most of our time doing kangaroo care. We were lucky in that we had nurses who were experienced with intubated babies, and so even when she weighed 475 grams we were able to hold her for hours a day. I know it’s only a sample size of one, but when I look at her now and see her doing well in school, reading, enjoying books, I do wonder about that connection. In any case, as you can tell by the pictures, our first experience didn’t scare us off, and we had a second baby. This time we got to almost 33 weeks. What’s interesting is that although Grace didn’t need much medical intervention, I was still a stress ball while she was in the NICU. It’s a good thing for me now to keep in mind – whether you’re the parent of a 25 weeker or a 35 weeker, the NICU is a stressful place to be.

And now we have two lovely miracle babies – and to be clear, I’M DONE with the baby making, and so now I have time to admire OTHER people’s babies.

After a bit of time out of the NICU, my husband and I wanted to give back – we just felt so grateful to both of the hospitals who helped us, so we started volunteering. And then in 2010, there was a job posting at Sunnybrook, where Maggie had been born.

(SLIDE 4) I think I had my application in about 10 minutes after I saw the posting. I have never wanted a job more and I gather that the poor HR guy who called me with the good news is still deaf in one ear. I started in November 2010 and I can honestly say I have the best job in the world. Now – the description is one thing, and what you see is definitely accurate, but there are other elements of my job that are harder to describe but quite interesting. I’m hoping that some of you might be interested in supporting this role at your own hospital – I’d love to have some colleagues or partners in crime!

(SWITCH SLIDE) So my role is quite unique in that it’s all about the grey areas. This is what makes some people nervous about a job like this – they don’t like the grey – but I would say all the great opportunities of this job come from the grey areas. I’ve been given great support, both in terms of training and in ongoing support, to help me manage these apparent contradictions. I can have those conversations clinical staff can’t have. I can ask questions that others may not be able to ask. I can sit and just be with families, which is not always possible for people with clinical responsibilities. I can help build bridges between people who know and people who want to know, because I remember what it was like not to know, and I remember what that felt like. You know the concept of “beginners mind”? As long as I can remember what it felt like to go into the NICU and not have any idea of what was going on, I think I can provide a useful service at work.

When we were in the NICU, I remember talking with a mom whose baby was a few months older than mine, and I remember how much it helped me to talk to her, to envision myself just a few weeks along the path. She was my light at the end of the tunnel. Whenever I feel confused or need to find focus in my work, I remember those conversations, and I remind myself that THAT is what I’m there for.

(SWITCH SLIDE) One very important part of my job is helping families build narratives – helping them understand their experience while they’re experiencing it – helping them imagine the possibilities and even the challenges.

We all build narratives based on what’s going on around us. When you’re a family member in the NICU, and you don’t have medical knowledge, you begin from such a profound position of disorientation. The noise, the lights, the machines, the endless streem of people! It’s so confusing.

So you’ll start to build your understanding based on whatever information is around you. Ideally, you’ll be given good information, through processes like rounds, by experts, and nothing else around you – like your environment, other experts, other people’s experiences – will contradict that. But NICU stories are not always certain – outcomes are unknown, a baby’s situation can change rapidly – and living with that uncertainty is one of the most challenging parts of being in the NICU. When people cobble together their understanding based on incomplete or not relevant information – like from Google or from the experience of their neighbour or so on … they can end up being so disappointed, or confused, or even angry.

So what I love to do is to help families build their understanding. I can’t base it on my own experience, because that’s just one story – although it can serve as a useful touchstone at times. But I can help remind them that for every moment of worry they experience in the hospital, there can also be a moment of joy. I can help encourage them to participate in their baby’s care, to give their baby all those things that only they can give. The gift of their voice, their smell, their presence, their touch, their love!

I can encourage them to ask questions, to learn, to understand how the NICU works and how they can be involved. And I should add – the people who taught me the importance of this, the people who taught me how to do this gently, kindly, and supportively, were and are nurses.

(NEXT SLIDE) As much as I love my job, it’s not completely perfect. I would say these are my biggest challenges, and if any of your units are thinking about hiring a parent, these may well be worth thinking about – and some of them may ring true for you too. Part time work is never really part time, and managing that can be difficult. When you love your work, what can you say no to?

The ego part is hard to talk about, but I’m trying to be open here – since my job is rooted in my own experience, sometimes the temptation is to make my experience more important than it needs to be. It’s important to remind myself constantly that my story is one story, my solutions worked for ME and me only – and that if my story gets in the way of me hearing someone else, then it’s a problem. For example, Maggie was my first, and so I was able to come every day to be with her in the NICU. That was one of the things on my list – the list I constructed for myself of all the things I should do if I wanted to be a good mother. But that’s my list. Someone else’s may look very different, and it’s not better or worse than mine. If I judge someone, and if I let them feel my judgment, then I’ll lose any chance I have for connecting with them.

I do find the emotional side of the job exhausting although I love it, in a way, and I think here’s where I still have so much to learn from my colleagues. You meet so many wonderful people, wonderful families, and you just fall in love with them – and usually things go well, but sometimes they don’t – and that can be so hard. And at times in order to help a family I have to go back to the very hardest days of my life. So for me, this is an area where I have no answers, just questions.

And this too – when to do the thinking work? The designing of programs, the creation of material, all of that – it takes time to craft and make. So time management becomes a huge issue, when balanced against the daily needs of the unit. Again – I have no answers – but am open to suggestions!

(next slide) But here is what the job is really about – not just mine but of so many people who work in the NICU. The great work that can be done here. Helping families get strong. Helping them deal with the challenges they’ll face – and most NICU families will face some challenges. If any of you had the chance to hear Dr Church speak, she speaks very beautifully about this. It’s also the chance to examine ourselves – what do we believe about life and what makes life worth living? When we are confronted with these big questions, how do we answer them? Are we kind, when we have the chance to be kind? Do we help when we have the chance to help?

And that’s ultimately what I love about my job – because I work with my heroes – I work with people who are kind, and who do help. They inspire me to do my best.

[next slide] So, let’s talk more about the sources of inspiration for this role. Let’s start with Amelia Bedelia – the idiot who bumbles around but in doing so sometimes exposes areas of confusion that could be clearer. There can be real value in inviting an outsider in – they can help you identify elements of your environment that are complicated but perhaps don’t need to be. An outsider can ask the doofus questions that everyone else is embarrassed to ask.

Then add a bit of Tina Fey. She talks about improv – about how in improv you try to say YES as much as possible, because YES is what gets you to that next step. So that’s what I’ve been trying to do – whether it’s saying YES to a family who needs something, or YES to nurses organizing a big scary conference who would like me to say something in front of a big group of lovely people. YES can lead to amazing things.

You might be looking at this pirate picture and thinking it’s a bit weird – but what I mean to say by this is that you can take ideas from anywhere. From other hospitals, institutions – from history, poetry, science, business, anything. So many people are working on new ways of communicating, teaching, sharing, and learning, and not all of them are in health care. Some of the most exciting solutions to our problems will come from such unexpected sources.

This next guy is one of our graduates. He’s very inspiring – he and his family are the whole point, really. He had a hard time of it when he was in the NICU, but now he’s got a resume as long as your arm and he’s off to school and doing great.

Now you’re thinking – Don Draper? Really? It’s partially an excuse so I can use a picture of Jon Hamm, but also because I often find myself thinking like an advertiser. How can I get my messages across to families? If I’ve got 30 seconds in an elevator with a family, how am I going to sell my idea about breastfeeding or kangaroo care or what have you to that family? And I also feel this way when I’m speaking publicly about my role or my institution. I love where I work and what I do. How can I communicate that effectively in one sentence? We may not have much time to spend with the families we serve – how can we use that time to make an impact?

And finally – to pick up again on my recurring theme – the people who give me most of my inspiration and who serve as my guides every day – are you. Nurses. And it’s not just me you teach. I see it every day with the families in our unit. You are the ones who turn it into a place of opportunity.

[next slide] I don’t mean to idealize the NICU – I know it’s a place that families would rather avoid. But I can’t entirely regret spending time there. I would have preferred to spare my children the experience, but I think I’m a better person for it. It can be a land of opportunity.

We’re all familiar with these other metaphors for the NICU. Early on one of our nurses described it as a rollercoaster, which made me realize just why I’d always hated rollercoasters. Later, I came to see it as a minefield, that we could only navigate through with infinite care and expert guidance. One wrong step, one set of poorly washed hands, and we could be facing disaster. On bad days, it felt like we were gladiators in Roman times, and that life or death was just a flick of someone’s hand away.

But there can be great opportunities in the NICU. You are taken out of your regular life and put into another context, sometimes for many months. And when that happens, there is opportunity for change. For some families, this might be an opportunity for them to witness first-hand what loving care looks like. For others, it can be a slow introduction to their own skills as parents that are there, waiting to grow.

Whether the lessons are subtle or overt, they are there, and the teachers are there. They are you, and when we, the parents, are there with you, day in, day out, we learn from you. When you help us find our confidence, that many of us may have lost when we first entered the NICU, you give us something that will last us a lifetime.

(slide) Let me illustrate this process with some photos of my own NICU experience. When I show you this photo, what do you see?

[slide] I’ll tell you what I saw. I saw a fetus. People were telling me I was a mother, but I didn’t feel like one. Machines were keeping her alive because my body had failed her. I was scared to touch her. I was scared about what the future would hold, scared if we’d made the right decision. We had had so many things go wrong already – we had already been on the wrong side of the statistics so many times.

But at the same time we were elated. She was alive! The people taking care of her were great! But I wondered – even in the midst of my elation – was this normal? The urge to feel normal again was so strong.

So the first gifts the nurses gave us were these – they restored our trust. They helped us feel important – like we made a difference to our baby. They helped us see her beauty. One of our first nurses said to us early on, “Have you noticed what elegant hands and feet she has?” And we looked, and we saw them. And they were! I mean, we couldn’t see much else of her because of tape & diapers, and of course she had no bottom – but she did have beautiful hands and feet! I took pictures of them and sent them to family – they were the only pictures I let anyone see for months. Her beautiful hands & feet.

What a gift that was! And so that’s what our nurses did - they told us the truth but encouraged our realistic hope.

[slide] In this slide, you see Maggie getting her first feed of my breast milk. We had received such great support around this from the first moments after her birth. I felt like such an idiot trying to collect those first few drops, but our nurse cheered us on like we’d just won an Olympic event. So weeks later, when we were able to give her this first feed of those first drops of colustrum, we felt amazing. We had been able to do something for her – we were able to be parents. I finally felt capable.

I should add - I was able to go back a few months ago and thank that very nurse who had helped us in the beginning, and say those magic words, “You were right”.

[slide] This picture illustrates just how your sense of personal boundaries may change after time of hospitalization, since this is a photo of my second daughter breastfeeding – and I’m just getting to know some of you! But really, I want to show you this because it shows a progression

[slide] So because of the nature of the support and the teaching that we got, we ended up in a great place – where feeding our baby felt natural and normal and easy. We got there because we got consistent information and encouragement. And the consistency is the key. Without that, we never would have ended up here.

[slide] So this is what our nurses were to us, and what you are to so many of the families you help. You’re cheerleaders, you’re experts, you’re champions, you’re supportive … and you teach us.

[slide] And how do you teach us? We’re not sitting in a classroom – there are no tests we have to pass. It’s worth looking for a moment at how adults learn. I should mention that in addition to not being very good at carrying babies to term, my academic background is in adult education, so this is something I’m quite interested in.

Most of this will make sense to you, I’m sure – one of the biggest impediments to adult learning is stress. And that’s certainly something all parents in the NICU feel. But we also feel highly motivated to learn, which is a plus. Research shows that giving adults opportunities to practice in an accepting, non-judgmental atmosphere will help them retain more information. Another interesting tidbit is that while people may have very different learning styles, almost all adults benefit from very practical, hands-on learning activities.

What does that mean in the NICU? It means that when you help parents care for their babies – when you help them hold their babies kangaroo care style, when you help them put colustrum in their baby’s mouth, when you show them how to read their baby’s signals, when you help them change a diaper for the first time, you’re not just being kind – although it is profoundly kind. You’re being a teacher. And a brief aside and another plug for kangaroo care – when you help parents hold their babies, it helps moderate the parental stress response – which in turn makes it easier to learn! It’s good magic.

[slide] What else is useful to know about adults and learning? Letting parents know the explicit benefits of what they’re doing will help us learn – focusing on what’s most important and telling us how this will help our baby or ourselves – that will help us stay focused and learn. You might find at times that parents seem to learn a lot and then stay on a plateau for a while – like they’ve hit a wall. That’s very normal for adults, even not considering the high-stress context of the NICU. Most adults can learn a certain amount of information and then need time to process and take it in before they can move on. So when you’re working with families it helps to keep this in mind – to wait for those moments when they’re ready to learn. It’s like going up a ladder – you pull yourself up, gather yourself, and then go up the next rung. You also have to dice up information into digestible chunks. Have you ever seen a parent’s face glaze over when you’re telling them something? I certainly have – and when I do I realize they’ve probably hit their info quota for the day, and I should come back later if there’s something I need to share with them.

Another point that is easy to say here but hard to do in a busy hospital context, is that it really pays to take time to talk with families to find out what they already know and what they want to know before you engage. Families often have a very good sense of their own boundaries, limits and informational needs – and if we give them space to share these, we can save time and prevent harm. If someone doesn’t feel they need to know something, it’ll be hard to get them to learn it – it’s hard to throw a ball to someone who won’t catch it.

I’d like to take a minute to talk about a really interesting project going on here in Toronto at Mount Sinai, the Family Integrated Care project. I volunteered for some time with it as a Veteran Parent. Some of you may have heard Dr Shoo Lee talk about it, and some of you may have seen Mary Galarza’s poster about it – if not I urge you to check it out. The project is based on the Estonian model of engaging Level 2 families directly with their baby’s care – and having nurses be their teachers. They’re almost done the pilot and the results have been truly astounding – the nurses are wonderful teachers (which isn’t surprising, really) – and the parents just love it. The babies are thriving and the families are thriving as well. It’s not a radical change – it’s really just adding some structure and formality to what so many of you do already – but the experience of it has been transformative for the families who’ve been involved.

[slide] It’s not easy, of course. We’re asking you to be patient, to tell us the same info again and again until we get it – and then we may complain that people keep telling us the same thing all the time! We don’t necessarily understand your other responsibilities and we can be so focused on our own stories that we may not even be aware that you have them. We’re so busy trying to see into the future that we may not be paying attention to what’s going on in front of our noses. But when you accept us and create an accepting, nonjudgemental atmosphere for us, then we can learn, and we do.

[slide] Of course, all of this learning results in many changes in parents – one of which is that we’ll become more active advocates for our children. For some, the word advocacy seems stressful – we associate it with conflict. “Those parents”. But I think the nurses who taught us showed us the power of positive advocacy – of how as parents you can positively engage with other people in your child’s life and work together. There is such a sense of shared interest – we all, parents and medical staff alike, want the best outcomes for our children. So if by empowering parents we’re encouraging them to take interest, to ask questions – even difficult questions – that is a good thing, It’s a good thing in a day-to-day sense, because involved parents improve their children’s outcomes, as we see with the Family Integrated Care project.

But it’s also a good thing because at some point, all these families will leave the NICU, and they’re going to need to be advocates for their children in the outside world. Some of our children will have disabilities, and we will need to fight for them. But as I mentioned earlier, the children who emerge from the NICU with minor morbidities, as described by Dr Church, are going to have their own hills to climb, and they’re going to need help from parents who understand positive advocacy.

So by encouraging parents to get involved, ask questions, and speak up, you’re preparing them for life outside the NICU, and you’re giving them a friendly training ground to prepare in. So in our unit we encourage parents to ask to be involved in care, we talk about what to do when they get told no, we encourage them to be advocates, because that experience of asking, of being reasonable, of seeking involvement is as valuable as the actual involvement. And these are life-long lessons. They start in the NICU –

I don’t yet know when they stop.

So I have a little slideshow here that a group of parents helped me do, because as I’ve said before, I’m just one story. There are thousands of families you’ve helped, there are so many of us who have become parents with your guidance, and when I put out the call for photos and stories I got so many responses.

I’ll just cue up the slideshow – while you watch this – the fruits of your labour - please think of this – these photos show our families, our children – and they show your masterpieces.

[Slideshow of families thanking Sunnybrook NICU staff follows]

Printed with the permission of the author.

Canadian Association of Neonatal Nurses website
Canadian Association of Neonatal Nurses National Conference 2012 program

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