| Date Posted: | 2012-11-06 |
| Employment Type: | Temporary Fixed-term (0.8 – 1.0 FTE) |
| Hours per Week: | 30 hours per week (0.8 FTE) |
| Department: | NICU |
| Available: | Immediately |
| Description of Position: | The
Parent Liaison will be an active member of the neonatal
inter-professional health care team. In order to fulfill this role the
Parent Liaison must be a parent of a graduate from the NICU at SickKids
and will utilize wisdom of personal experience coupled with the unique
perspective of being a family member in a health care team. The Parent Liaison will enhance overall family engagement in their infants clinical course of treatment in the NICU. The Parent Liaison will establish improved communication processes with families to support their integration as a member of the Health Care Team. This will be achieved through the initiation, implementation and evaluation of parent activities in the NICU e.g. parent social time. Health education on how they can care for their infant in the NICU, provide guidance and support on understanding NICU practices e.g. hand hygiene. The NICU Parent Liaison will ensure the sustainability of parent programs and support future initiatives to support growth and coordinated care of the family care experience in the NICU environment. The Parent Liaison will demonstrate a commitment to championing family care in parallel with organizational strategies and vision. |
| Qualifications: | •
Post secondary degree/diploma in a related discipline (eg. Nursing,
sociology, psychology, equity studies, etc.) or an equivalent of
education and experience • Graduate parent of NICU ( must be one year post discharge) • Experience in project management would be considered an asset |
| Salary: | Commensurate with Experience |
| Available to: | Internal & External Candidates |
| Deadline: | 2012-11-15 |
| How to Apply: |
External candidates applying to posted vacancies must submit a resume via e-mail to ex.careers@sickkids.ca quoting file number CPS12396-KS
in the subject line of your e-mail. It is suggested to copy and paste
the file number from this page to ensure it is captured correctly. Only
applications submitted through ex.careers@sickkids.ca will be considered. External candidates must also submit a completed application for employment.
Internal SickKids staff should review the ‘View Job Openings’ site on
KidWeb or contact Human Resources with the file number for assistance.
Please note that resumes must be sent in PDF or Word format only.
General inquiries sent to this e-mail address will not be answered.
SickKids is strongly committed to diversity within its community and welcomes application from visible minority group members, women, Aboriginal persons, members of sexual minority groups, persons with disabilities and others who may contribute diversity within our organization. SickKids is also committed to providing accommodations to persons with disabilities in our recruitment process. Accommodations are available upon request to all applicants, including applicants who are selected to participate in an interview, assessment or selection process. If you require any accommodations to fully and fairly participate in the recruitment process, we will endeavor to provide a suitable accommodation in a manner that takes into account the applicant's accessibility needs. We thank you in advance for your interest. Only those applicants selected for an interview will be contacted. In accordance with our Hospital policy, employment at SickKids would be conditional upon you providing the Hospital with satisfactory documentation of tuberculosis testing and your immunization status. |
NICU parent liason position
A Parent Liaison role has just been advertised for SickKids NICU ! (PDF) This is a first paid parent role in the NICU to the best of my knowledge and an amazing opportunity to make an incredible difference in the lives of families and children when they are most vulnerable. Please circulate widely.
Big thanks to former NICU mom Janis Purdy and SickKids staff for making this happen, especially Nurse Practitioner Kim Dionne and Manager of Clinical Programs Audra Jesso.
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
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
Family invitation to SickKids Patient Safety Symposium which includes celebrated family centered care adviser Juliette Schlucter presenting and facilitating a breakout
On Monday June 25th, 2012 SickKids will host their 8th Annual Paediatric Patient Safety Symposium. As partners in patient safety, our families are integral to advancing patient safety and quality and we extend an open invitation to all family members who would like to attend for the day (or parts of the day).
This year in particular, we are extremely proud to have the patient/family experience represented in our symposium agenda with our guest speaker Juliette Schlucter, ran internationally recognized speaker and expert on child- and family-centred care. Juliette will lead the breakout session "Patient/Family Engagement: Changing Quality, Safety and the Patient Experience" from 11:00-11:45 (Room TBD) and a plenary session she has titled " Shall We Dance: The Partnership between Patients, Families, and Professionals to Advance Safety, Quality and the Patient Experience" from 2:45-3:30 in the Hollywood Theatre. The cost to families has been waived for this event but we do ask that you register online or email Rita Damignani at rita.damignani AT sickkids.ca .
We hope you can join us!
Then from 4:30-6:30 pm, Juliette will facilitate a workshop for the Family Centred Care Advisory Council and any hospital committees with patient/family representation to explore how families and staff can be most effective in advancing patient and family care and advisory. Juliette has requested workshop attendees prepare a list of specific needs, challenges, concerns, questions and opportunities. Please RSVP to Sarah McBain, Manager of the Family Centre at 416-813-6528 or by email at sarah.mcbain AT sickkids.ca if you would like to attend.
This year in particular, we are extremely proud to have the patient/family experience represented in our symposium agenda with our guest speaker Juliette Schlucter, ran internationally recognized speaker and expert on child- and family-centred care. Juliette will lead the breakout session "Patient/Family Engagement: Changing Quality, Safety and the Patient Experience" from 11:00-11:45 (Room TBD) and a plenary session she has titled " Shall We Dance: The Partnership between Patients, Families, and Professionals to Advance Safety, Quality and the Patient Experience" from 2:45-3:30 in the Hollywood Theatre. The cost to families has been waived for this event but we do ask that you register online or email Rita Damignani at rita.damignani AT sickkids.ca .
We hope you can join us!
Then from 4:30-6:30 pm, Juliette will facilitate a workshop for the Family Centred Care Advisory Council and any hospital committees with patient/family representation to explore how families and staff can be most effective in advancing patient and family care and advisory. Juliette has requested workshop attendees prepare a list of specific needs, challenges, concerns, questions and opportunities. Please RSVP to Sarah McBain, Manager of the Family Centre at 416-813-6528 or by email at sarah.mcbain AT sickkids.ca if you would like to attend.
Tax Tips 2011 Special Needs Planning Group
Graeme Treeby's 18 page guide to tax credits, refunds, deductions and other savings to cover special needs disability costs (1/2 Mb PDF) notes "It is not to be taken as Accounting or Tax advice but rather, as a resource to provide a starting point for your journey through the maze that is Income Tax Preparation and Planning for people with a disability and their families." Graeme Treeby can be reached at The Special Needs Planning Group.
"Paradoxical Lives" by Frank Gavin
When many years ago our son, Peter, was in Sick Kids with an acute kidney and blood infection, my wife and I took turns staying with him night and day. I remember leaving the hospital on Easter Sunday and looking up at the window of his room on the seventh floor and realizing that that room was now our family’s home. And opening the front door of our house twenty minutes later felt more than a little like entering a hotel.
No doubt the experience would have been different and even more complicated had there been another child at home. Still, my experience since then with other parent volunteers at SickKids and elsewhere suggests that what struck me that Easter—that we were now living in the realm of paradox where contradictions and seemingly incompatible realities sat side by side—has marked the lives of most of us. We had unexpectedly found ourselves in a place where we were, among all the various people and professions at the hospital, both least at home and most truly at home.
Peter was never a patient in the NICU, but I can easily imagine that the paradoxical situations in which we found ourselves, e.g. wanting to move him just a bit to find a more comfortable resting position but fearing that this might cause him only pain or disconnect him from something to which he absolutely needed to be connected, must be even more common and acute in the NICU. I wanted very much to be a competent father—and I could see and feel that Peter wanted me to be just such a father—but initially I didn’t even know I could unplug the IV pole and thus carry him, squirming in pain, much more safely to the washroom where I could perform the one task I had been assigned: collect and measure his “outputs” every hour or so through the night. For the first few nights I was next to useless.
Paradoxes abound for families, both in and out of hospital. We simultaneously feel full of hope and close to despair and are alternately resilient and exhausted. Capable of absorbing and applying lots of complex new information one day, we are barely able to make sense of simple instructions the next. Parents and children often labeled as and then expected to be “heroes” find themselves acting or thinking in ways far from heroic. For many, the impossible dream is to live utterly ordinary lives.
Perhaps the hardest paradox to come to terms with is that wonderfully rich, sometimes enduring, and even humour-tinged relationships—with nurses, doctors, therapeutic clowns, respiratory therapists, and, not least, other parents—often grow, directly or indirectly, out of our own and, more to the point, our children’s most painful experiences. Sometimes one parent of a child seeks out or simply finds himself or herself in such relationships while the other parent does not. Another paradox? Or maybe just the simple or not-so-simple consequence of differences in personality.
There are, of course, grimmer, more profound, and more intractable paradoxes than the ones I have described and referred to, paradoxes certainly familiar to all who have spent time in level three NICUs. They elude understanding and even, perhaps, imagination. Still, all of us—healthcare professionals included--would do well to recognize and attend to the paradoxes we and those around us live with and through. We’ll judge (ourselves and others) less and understand more.
Frank Gavin teaches English at Centennial College in Toronto and serves as one of two public members on the Canadian Drug Expert Committee of The Canadian Agency for Drugs and Technology in Health, a body that recommends to public drug plans which drugs should be listed. This essay was written in response to a request from the editor of the Linden Fund newsletter to write about paradox, a topic Frank touched on in his presentation to parents from three Toronto NICU groups in November 2011. Frank was a co-chair of the Family Advisory Committee at SickKids and the founder and chair of the Canadian Family Advisory Network. He received the Volunteer Humanitarian Award at SickKids in 2002 and the Contribution to Child Health Award from the Canadian Association of Paediatric Health Centres in 2008.
Father's palliative parenting grief research poster
The poster for "Fathers' Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care" has been accepted at the Hospice Palliative Care Ontario 2012 conference.
Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.
Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.
Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.
Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.
SickKids and social media: an interview with Janice Nicholson
In November, Ashley Weinhandl with the Ontario Hospital Association and health writer Colleen Young interviewed Janice Nicholson, Senior Manager of Strategic Communications at SickKids. Janice has taken on the exploration and launch of social media at SickKids over the last few years and here are a few snippets related to social media. See the full interview where Janice talks about what channels the hospital chose and why and describes the Upopulis platform. In a nutshell, social media use at SickKids is about providing trusted and consistent information, receiving feedback and listening to the conversation.
Ashley: Tell us about your experience. What unique learnings have you encountered?
Janice: I’ve learned that it’s important to manage expectations about social media. It is not the solution to all of our communications challenges; it is simply another tool in our tool kit. I also have come to believe that to have a real effect in the social network, we need to have a coordinated approach. We have a strong brand and to maximize our voice and reach our audience on channels like Twitter, we need to maintain one brand. By having too many voices out there we end up splintering off into smaller channels. If we maintain master accounts, we can share the messages of all of our SickKids family through one voice and reach a wider audience. The key is to target those messages using keywords and hashtags. There is a lot of interest in embracing social media at SickKids, but we must manage expectations of who is using social media at SickKids and how they will represent our brand. We are taking a phased approach and now that we have taken the time to listen and are beginning to establish a voice, we are on to the next phase. We plan to continue to build as we start to engage our staff and stakeholders and help engage them in the conversation.
...
Ashley: What one piece of advice would you give other institutions for community building?
Janice:
Get involved with social media as fast as you can because if you’re not there they will still be talking about you. Being there allows you to know what is being said so you can respond accordingly. Since it’s free, it is a great tool for not-for-profit and publicly funded institutions. The important thing to remember is that you are entering a channel that moves at a crazy speed and you need to be extremely responsive. So while it is free to use, it requires resources and an investment of time and strategy. There are resources required and you have to take it seriously and have a plan.
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