Sasha Bella Stein Blumberg Forever 2143124

NICU parent liason position

noreply@blogger.com (Sasha Bella Forever) — Thu, 08 Nov 2012 15:26:00 +0000

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.

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.

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

noreply@blogger.com (Sasha Bella Forever) — Sat, 22 Sep 2012 19:00:00 +0000

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

Family invitation to SickKids Patient Safety Symposium which includes celebrated family centered care adviser Juliette Schlucter presenting and facilitating a breakout

noreply@blogger.com (Sasha Bella Forever) — Fri, 15 Jun 2012 18:59:00 +0000

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.

Tax Tips 2011 Special Needs Planning Group

noreply@blogger.com (Sasha Bella Forever) — Wed, 25 Apr 2012 06:06:00 +0000

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

noreply@blogger.com (Sasha Bella Forever) — Wed, 29 Feb 2012 06:53:00 +0000

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

noreply@blogger.com (Sasha Bella Forever) — Wed, 15 Feb 2012 07:10:00 +0000

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.

SickKids and social media: an interview with Janice Nicholson

noreply@blogger.com (Sasha Bella Forever) — Tue, 07 Feb 2012 22:06:00 +0000

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.

FREE WEBINAR "Improving Patient Outcomes and Experience: How to Include the Patient and Family"

noreply@blogger.com (Sasha Bella Forever) — Tue, 07 Feb 2012 18:58:00 +0000

If you are interested in patient and family engagement in safety or other areas of health care, this looks like just the webinar and it is free registration.

Improving Patient Outcomes and Experience: How to Include the Patient and Family

The Agency for Healthcare Research and Quality tells patients that "The best way you can help to prevent errors is to be an active member of your health care team. That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results.” The Joint Commission encourages patients to be active participants through its SPEAK UP Campaign.

Unfortunately, the public mostly learns about patient safety through negative media stories. This thought-provoking presentation will teach you how it can be celebrated and how to encourage the patient's family takes some of the responsibility for safe care. Through storytelling and comparisons, Ms. Corina will leave you eager to include your patients and their families in patient safety.

But what exactly can the family do to be part of the team? How can they better understand their role in the patient's safety such as reducing falls, medication errors and hospital-acquired infections? Attend this webinar to learn how to communicate with families to make their presence work for you.

Participants will learn how to:

Talk about patient safety with patients and their families to help ensure the best outcomes

Teach patients’ guests about safety including falls, infections, medication safety, surgery safety and health literacy

Reduce readmissions and injuries through clear, critical communication

Get tips to develop a Patient Safety Advisory Council in your facility and learn how to choose the best representatives

Presenter

Ilene Corina, President and Founder of PULSE of New York

Selected as one of Modern Healthcare’s 100 Most Powerful People in Healthcare of 2009 and a Fellow of the AHA’s Patient Safety Leadership Training, Ilene Corina is a nationally recognized advocate for patient safety. She is the president and founder of PULSE of New York, a grassroots patient safety advocacy group that was formed in 1997. She runs support groups for survivors of medical injuries and develops patient safety programs for medical professionals and consumers of healthcare.

Ms. Corina has appeared as a patient-safety expert on CNN, Fox News and other television and radio news shows, and is a popular lecturer and author. She discusses the patient’s role in patient safety and the changing culture to form partnerships to improve outcomes. She also helps healthcare professionals work with patients and their families after a medical injury or death has occurred, and has developed curriculum on disclosure of medical errors.

Ms. Corina is a board member of the Joint Commission and the National Patient Safety Foundation, and has won numerous awards, including the 2010 MITSS HOPE award, presented by RL Solutions.

Help patient and family centered care at SickKids

noreply@blogger.com (Sasha Bella Forever) — Thu, 26 Jan 2012 22:13:00 +0000

SickKids Children's Council and Family Centered Care Advisory Council and Families as Partners in Patient Safety seek patients and families and staff to work to advance SickKids patient and family centered care.

Family Education Day 2012 at SickKids is on April 1 - save the date

noreply@blogger.com (Sasha Bella Forever) — Thu, 26 Jan 2012 21:56:00 +0000

Strengthening Relationships in Child Health Care: Navigating, Advocating & Communicating

Draft agenda (to be confirmed in February)

9:00-9:15 Registration, coffee & socializing in the rotunda

9:15-10:00 Welcome and opening keynote (to be announced)

10.00 - 12.00 Panels where possible co-facilitated by staff and parents

- Strengthening parent-provider relationships through stories of positive communication and successful partnership

- Strengthening family resilience, Self Care and Sibling Support

- Strengthening child autonomy in their health care team relationships, transitions and the adolescent-adult transition

- Strengthening patient and family voice: preparing children and youth for proceedures and helping patients and families speak up

- Rights and Resources including financial benefits and credits and educational supports

12:00-1:00 Lunch and networking - tables include materials from FCCAC, hospital groups & relevant outside groups

1:00-2:00 Panel with staff and parents discussing collaboration and communication and strengthening relationships

Sessions will have written materials for participants and participants will be asked to fill out evaluation forms to improve next year's education day.

Marcel Panas new Family Centered Care Coordinator at Stollery Children's Hospital

noreply@blogger.com (Sasha Bella Forever) — Thu, 05 Jan 2012 20:27:00 +0000

Stollery NICU has added a wonderful NICU dad, bereaved dad and experienced family advisory member to their team to champion patient and family centered care. Family members hired by health facilities is a small, growing and important health care treasure to be celebrated. Congratulations Marcel, NICU and Stollery!

I am pleased to announce that Marcel Panas has accepted the part-time position of Family Centred Care Coordinator at the Stollery Children’s Hospital.

Marcel has been a very active family member on the Stollery Family Centred Care Network, serving as co-chair of the Family Centred Care Council and as a member of the NICU Family Advisory Care Team. Marcel has worked at Bellamy Software for the past 13 years managing the development of software products. He has a vast experience in project management, and leading teams of individuals in both his professional and volunteer roles. He is currently working on a Bachelor of Health Administration degree. Marcel brings with him a broad range of experience both professionally and as a father, and has a great passion in serving the children and families within the health care system.

Please join me in welcoming Marcel to this new role as we continue in our journey of becoming a centre of excellence reflecting the principles of Family Centred Care.

Sincerely,

Heather Mattson McCrady

Manager, Family Centred Care

Stollery Children’s Hospital

Read more from Marcel at the Panas family website.

Barbara Muskat appointed Clinical Director of Social Work at SickKids

noreply@blogger.com (Sasha Bella Forever) — Tue, 20 Dec 2011 17:10:00 +0000

I am pleased to announce the appointment of Dr. Barbara Muskat, PhD to the position of Clinical Director, Social Work reporting directly to me.

Barb is an accomplished leader and academic, having held numerous roles in child and family health including Director of Community Consultation at Integra, Toronto; Social Worker, Metropolitan Toronto Social Services; and most recently at SickKids as an Academic and Clinical Specialist with a focus on research.

Barb is an Assistant Professor at the University of Toronto and is the recipient of a 2011 grant to support her research on the “Experiences of Parents of Paediatric Patients with ALL, Two Months After Completion of Treatment”. Additionally she received a 2010 New Investigators Grant from the National Grants Program from SickKids Foundation.

Barb has published extensively and brings a wealth of clinical social work skills to her broad research expertise.

Wishing her much success as she takes on the operational and academic responsibilities for the social work program at SickKids.

Please join me in welcoming Barb to her new role.

Regards,
Karen Karen Kinnear, RN BScN MBA
Executive Director, Clinical Labatt Family Heart Centre and Critical Care Services
The Hospital for Sick Children

In addition to all the achievements mentioned above, Barb is also the current staff co-chair of the Family Centered Care Advisory Council and so her appointment doubles up the support and the opportunity for SickKids patient and family-centered care research and practice.

Margaret Keatings, Chief of Interprofessional Practice and Chief Nurse Executive, announces retirement

noreply@blogger.com (Sasha Bella Forever) — Tue, 20 Dec 2011 17:00:00 +0000

Margaret Keatings, our Chief of Interprofessional Practice and Chief Nurse Executive, has announced her retirement. Margaret has dedicated her entire career to the nursing profession, including nursing practice, research and education. She joined the Executive Team at SickKids in 2004 after having served in senior leadership and clinical roles at both University Health Network and Hamilton Health Sciences. Margaret has had an impressive impact on SickKids; there has been a steady increase in nursing engagement scores across the organization, RN Council was expanded and Advanced Practice Nursing roles have grown.

In addition to her deep commitment to the nursing profession, Margaret has been a passionate champion for inter-professional practice and education at SickKids where she has both developed and executed an integrated strategy. She is presently working on a strategy to advance the academic mandate of health disciplines.

Family-centred care has also been an important priority for Margaret. She has played a key leadership role in advancing family-centred care at SickKids, where she has enhanced the family advisory committee model and increased the number of families and patients represented on hospital committees and re-designed the patient representative program.

Margaret has led a number of innovative initiatives, including a pilot of nurse practitioner-led clinics for paediatrics and a project with Citizenship and Immigration Canada which has resulted extensive cultural competence training and translation of educational materials for patients and families. This work is now being shared with the broader healthcare community to advance cultural competence across the province.

Academically, Margaret is a recognized leader in nursing and ethics having co-authored the third edition of Ethical and Legal Issues in Nursing during her tenure at SickKids. She is appointed at both the University of Toronto and McMaster University. During her time at SickKids she chaired the CAHO CNE sub-committee during which time they were instrumental in successfully advocating for the New Graduate Guarantee. Margaret also championed the development of RNAO Healthy Work Environment Best Practice Guidelines.

In her retirement, Margaret plans on travelling, renovating her homes and continuing to contribute to advancing nursing and health care both here and abroad.

Formal recognition of Margaret’s many contributions to SickKids will be held in the coming months. I invite you to please join me in congratulating and thanking Margaret as she enters the next chapter of her life.

Kind regards,
Mary Jo

Mary Jo Haddad, CM, MHSc, LLD, BScN
President and CEO The Hospital for Sick Children

National Meeting on Grief and Loss funded by Canadian Institutes of Health Research (CIHR)

noreply@blogger.com (Sasha Bella Forever) — Tue, 20 Dec 2011 07:10:00 +0000

The second Grief and Loss Meeting will be held at the The York University Psychology Clinic on Friday February 10th, 2012.

With funding from the Canadian Institutes of Health Research this meeting continues a cross-national and interdisciplinary conversation on grief and loss including theory, research and practice at York University in Toronto, The Graduate Center and City University of New York.

The intention is to bring together a diverse group of people across professions who normally do not talk to each other to share resources, hear and converse on community and cultural responses to grief and loss and continue a budding cross-national exchange program launched in 2011.

Preliminary Agenda:

Screening of GriefWalker and discussion with Stephen Jenkinson. Griefwalker is a National Film Board of Canada documentary featuring Stephen Jenkinson’s work with dying people. Griefwalker shows Jenkinson in teaching sessions with doctors and nurses, in counselling sessions with dying people and their families. Questions to be explored include: Where does our culture’s death phobia come from? Is there such a thing as good dying? How is it that grief could be a skill instead of an affliction? How can seeing your life’s end be the beginning of your deep love of being alive? See http://www.orphanwisdom.com

Panel on cultural and community responses to grief and loss will include talks by:

Kate Kenny from South Riverdale Community Health Centre speaking about the Grief and Loss Education and Action Project focusing on women’s experiences of grief and loss following custody loss.

Lynn Lavallee from Ryerson University speaking on the Normalization of Death and Dying: A Story of the Generational Impacts of a Métis Family.

Mary Ellen Macdonald from McGill University speaking on Grief Online: How virtual memorialization may be changing concepts of childhood death and parental bereavement.

Registration costs $30. Spaces are limited and people will be enrolled on a first come first serve basis. You must register in advance in order to attend the meeting. RSVP to griefandlossproject AT gmail.com

Bioethics week Nov 7-11 - flyer of events

noreply@blogger.com (Sasha Bella Forever) — Mon, 07 Nov 2011 17:32:00 +0000

There are some very interesting presentations at SickKids Bio-Ethics week running Nov 7-11.

Please check out the flyer of events for more details.

NICU retreat brings together parents from Sunnybrook, Mount Sinai and SickKids

noreply@blogger.com (Sasha Bella Forever) — Wed, 02 Nov 2011 18:41:00 +0000

Tri-Hospital Parent Advisories

“Best Practices for Our NICUs”

Saturday, November 5th 2011

Sunnybrook Hospital, 2075 Bayview Avenue

8:00 – 9:00 Breakfast

9:00 - 9:30 Welcome and introductions

9:30 - 10:00 "Beyond "Giving Back": Lessons Learned by Veteran Parent Volunteers" - Frank Gavin founded the Canadian Family Advisory Network (CFAN) and currently serves as CFAN's National Liaison.

10:00 - 10:30 “Peer Support: the important role”, Mt Sinai

10:30 - 11:00 coffee break

11:00 - 11:30 “Getting to Yes: family and staff partnerships at Sick Kids NICU”, SickKids

11:30 - 12:00 “The effectiveness of a Paid Parent”; Sunnybrook

12:00 - 12:30 Lunch with speakers Dr. Diambomba, Mount Sinai & Dr Ng, Sunnybrook

12:30 - 1:00 Group discussion/wrap up

For more information or if you are interested in attending (spots are limited) please contact Kate.Robson AT sunnybrook.ca

Janis Purdy and I will share activities at SickKids' NICU family council and we look forward to a good learning and networking opportunity for parents and staff focused on patient and family engaged care in the Neonatal Intensive Care Unit.

Palliative Research Symposium with Dr Joanne Wolfe - October 5, 2011

noreply@blogger.com (Sasha Bella Forever) — Sat, 15 Oct 2011 18:06:00 +0000

The third annual Paediatric Palliative Care Symposium focused on early integration of palliative care and family participation in palliative research and included a focus group, a participatory exercise to prioritize research priorities and a Cafe Scientifica of current TRAC-PG studies.

Grand Rounds keynote
The Grand Rounds keynote and special guest was Joanne Wolfe, MD, MPH and Director of the Pediatric Palliative Care at Children's Hospital Boston and Division Chief of the Pediatric Palliative Care Service Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute. Dr Wolfe's research focus on palliative care uses clinical trials to evaluate care approaches that preserve hope and optimize quality of life and comfort. The symposium was supported by CDP, SickKids Foundation and the Sasha Bella Fund at the foundation. Thanks to Frank Gavin for sharing notes on Dr Wolfe's Grand Rounds presentation.

One of the studies she referenced showed, as did one of the studies mentioned in last year's Grand Rounds presentation, that there is little or no real difference in what parents in different countries value and are concerned about in relation to palliative care.

Another study showed that questions/issues related to communication are the ones that parents care most about while the professionals were more focused on such matters as the timing or appropriateness of interventions. She also mentioned that parents, unlike the professionals, were not much concerned with privacy/confidentiality. The factors parents listed to rate good care included relationships, information, communication and preparation for death, compared to physicians who listed pain, length of hospitalization. These issues were verified in our small group discussion with parents.

One study she mentioned asked a number of children with life-threatening conditions about how frequently they experienced pain and (I think) how severe the pain was and found that none of those who said they had experienced pain had received treatment for pain. She stressed how unacceptable this was.

She mentioned the study that found that a particular group of adults who received palliative care actually lived longer than a comparable group who did not receive palliative care, but she cautioned that "it's just one study."

She interwove a number of stories of particular patients and families--with pictures--into her presentation. What stood out was the uniqueness of each situation, the impossibility of generalizing about what are the "right decisions," and the unreliability of many of the predictions that were made by doctors about how long the child would live, what the child's life would be like, etc.

Valerie McDonald, bereaved mom and SickKids staff educator and volunteer added her highlights.

Suffering: she equated it with a threat to the integrity of a patient’s life and is different for everyone.

Decision-making: it is important to help with decision-making. In one study of pediatric cancer patients with 30% chance of success the majority opted for cancer therapy and most regretted it later. For young people making decisions about End of Life care, relationships with others are key.

Planning location of death led to more deaths at home, fewer in ICU and families felt better prepared.

Dr Wolfe's Pediquest Study collected symptoms and quality of life reports from families electronically, including children, and these reports helped children speak with doctors, helped parents understand how children were feeling, helped providers understand psychosocial aspects and helped them talk to families.

Name: Boston Children’s calls their palliative care team the Pediatric Enhanced Care Team; debate ensued…

5 Cardinal Questions for PedPall providers: 1. Tell us about the child as a person 2. What is your understanding of the illness 3. What it most important to you, your child 4. What are your hopes? 5. What are your worries?

One question I was left with at the end (it was debated somewhat) was—is it better to have a separate palliative care team or should palliative care be integrated as a treatment modality?

The keynote was followed by a focus group that included a bereaved mom and dad. Then the lead researcher on current TRAC-PG study reviewed their teams work. Several of these studies were partly funded by the Innovation Fund for pediatric palliative research supported by the Sasha Bella Fund including a study that I am participating on for the first time about Father's Experiences with Parenting and Grief. Here are slides Laura Beaune presented. Laura and Dr Christine Newman, when asked how the fund could most help palliative care delivery at SickKids suggested the research support focus.

Building Conscensus on Research Priorities
Participants then broke into groups to brainstorm research priorities and a parent group was facilitated by Valerie with Joanne writing our ideas on flip chart paper and having an opportunity to meet and share stories. From the questions, the strongest themes were:

Peer support: its role in palliative and bereavement care; what are barriers and best practices?
Communication: who talks to families, who most trusted/experienced, when, how; communicating with conflicted families and extended families
Provider education: what role can families play in hospital education?
Financial impact of chronic illness and lengthy hospital visits
Integrating supports across the continuum of care: quality support in urban and rural centers and homes

Dr Wolfe was surprised that pain control and suffering wasn't on the SickKids' parent list though it often features in family accounts.

Poster Presentations & Café Scientifica

Welcome and introductions by Dr. Christine Newman (Palliative Care physician, SickKids)

1) Laura Beaune, David Nicholas, Maru Barrera, Mark Belletrutti,, Jonathan Blumberg, Stanley Ing, and Mathew Milen. Fathers’ Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care

2) A Thompson, K Miller, J Crossenbacher, Maru Barrera, B Compas, B Davies, D Fairclough, MJ Guilmer, N Hogan, K Vannatta, & C Gerhardt. Multiple Perspectives of Bereaved Children’s Emotional and Behavioral Adjustment after a Sibling Death from Cancer

3) Kimberley A. Widger, Ann E. Tourangeau, Room for Improvement: Mothers’ Perspectives on Children’s End-of-life Care

4) Ceilidh Eaton Russell, Kimberley Widger, Maru Barrera, Laura Beaune, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, "Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child"

5) Barbara Muskat, Samantha Anthony, Laura Beaune, David Brownstone, Pam Hubley, Dr. Christine Newman, Dr. Adam Rapoport. “Experiences and perceptions of paediatric health-care professionals providing end-of-life and palliative care”

6) Susan Cadell, Bluthardt, C., Betty Davies., Hemsworth, D., Stephen Liben., Hal Siden, Rose Steele. & Lynn Straatman. “Elation” and “Grief”: Illustrating how the Positive and the Negatives Co-exist for Parents of a Child with a Life-Limiting Illness.

7) Rose Steele, Hal Siden, Rollin Brant, Susan Cadell, Betty Davies, Lynn Straatman, Adam Rapoport & Gail Andrews . “Charting the Territory: Symptoms in children with degenerative, life-threatening conditions”

8) Adam Rapoport, S. Lawrence Librach, Giovanna Sirianni, Amna Husain. “Not just little adults: Palliative care physician attitudes towards providing care for pediatric patients.”

9) Deborah Tomlinson, Pamela Hinds, Ute Bartels, E, Hendershot , Lillian Sung. “Parents can Sensitively Report Determinants of Quality of Life for Children with Cancer Receiving Palliative Care”.

10) Laura Beaune, David Nicholas, Susan Cadell, Cindy Bruce-Barrett. Pandemic Planning: Developing Consensus towards a National Planning Guide for Hospital Based Pediatric Palliative Care programs”.

11) Adam Rapoport, Rose Steele, Maria Rugg, Christine Newman. “Parental perceptions of forgoing artificial delivery of nutrition and hydration during end-of-life care for their children.”

Authors who are members of TRAC-PG: Laura Beaune, David Nicholas, Maru Barrera, Kimberley A. Widger, Ceilidh Eaton Russell, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, Deborah Tomlinson, Lillian Sung

Suddenly "I" Was "Them" - when the baby of a bioethics director is admitted to the NICU by Felicia Cohn

noreply@blogger.com (Sasha Bella Forever) — Wed, 12 Oct 2011 15:12:00 +0000

Suddenly, I was a “them.” The moment that should have been the most joyous in my life became the most tragic. In the shift from health care professional to mother of a critically ill newborn, I learned things that redefined both my life and my professional identity. Never before had the “us vs them” divide been so clear. I had worked in the “us” role for years and was comfortable and confident in my ability to understand “them.” I knew that health care professionals were supposed to be powerful, authoritative, and knowledgeable. Families, I knew, were supposed to be vulnerable, dependent, and fragile. I thought that I was able to bridge that divide pretty well. With the birth of my child, Amanda, I became a “them.” In that moment, I was thrust into the role of the NICU mother. I had long sympathized with and supported such mothers. I could now truly empathize with those parents whom I had witnessed standing helplessly next to the small bassinets in the most technological of settings, crying many tears and uttering daily prayers of healing and thankfulness for modern medicine. When it was my own baby, I tried to draw on all that I had learned and taught in my role as a bioethicist. My experience provided little solace. My knowledge base failed me. From this experience, I have come to understand the world of the patient and the limits of empathy. I continue to struggle with three questions that my daughter’s illness occasioned all too personally: the nature of the questions physicians pose to our patients/families; the reliability of the informed consent process; and the just allocation of health care resources.

Read full article (PDF). Thanks to Janis for sharing with NICU's Family Centered Care Committee at SickKids.

Are you still sad? By Valerie McDonald

noreply@blogger.com (Sasha Bella Forever) — Sat, 17 Sep 2011 04:30:00 +0000

Here is a lovely reflection on bereavement rituals or, as the author describes them, memory traditions.

Someone asked me recently if I am still sad about the death of my daughter, Natalie. I was surprised by the question and even a little offended. Of course I’m still sad, but when I stopped to reflect, I realized that the sadness has changed in the nearly 12 years since she died.

Natalie was our middle child—the organizer, instigator and peace-maker between her two sisters. She died when she was 9 years old after being treated for leukemia for two and a half years. We had no idea how to carry on without her lively spirit in our family. When she died, we not only lost Natalie, we also abruptly lost the support of most of the health care providers who had cared for her and for us over many years. It was other parents who taught us most about how to cope with that shattering sorrow.

From our friends, we learned to celebrate our lively girl and include her in our lives. Every year, on her birthday, we invite her cousins and best friends to share her favourite meal of Fettuccine Alfredo and rhubarb cake. We can’t give gifts to Natalie, so we give them to our guests instead. At Christmas, Santa still fills her stocking along with those of the rest of the family. On her “Death Day” (inspired by Nearly Headless Nick, Natalie’s favourite Harry Potter ghost), we have a tradition of talking about how we can each do something to make our family better without Natalie.

During the first few years, each of these occasions was an unbearably sad reminder of her death. But gradually, we began to look forward to these remembering-Natalie-traditions. But the first time her best friend couldn’t attend a birthday party, I was devastated. It felt as though some part of Natalie had died all over again.

Then another wise friend reminded me that a 16 year old would likely not have had a family birthday party and might even have outgrown Fettuccine Alfredo. I realized that our remembering-Natalie-traditions could also grow and change, just as she would have done.

On the first Death Day that our family could not be together, we decided that each of us would draw a picture in honour of Natalie, who was a talented and prolific artist. The forced change in tradition encouraged us to explore her passion ourselves and to try something that she loved. Death Day was once the saddest day of the year. But now it is a day of art and creativity.

This past March, we celebrated her would-have-been twenty-first birthday. After living for nearly 12 years without her, yes, I am still sad. But after nearly 12 years, there is space to remember and celebrate the gifts she gave us that continue to enrich our lives.

Valerie McDonald is a former chair of SickKids family advisory council who also volunteers time to speak on palliative support and policies and assist with the research selection committee of TRACPG which the Sasha Bella Fund supports. This reflection is reprinted from the TRACPG's summer 2011 newsletter.

SickKids 2011 Paediatric Palliative Care Research Symposium

noreply@blogger.com (Sasha Bella Forever) — Mon, 15 Aug 2011 04:42:00 +0000

On October 5 2001, the national Team for Research in Adolescent and Childhood Palliation and Grief hosts SickKids third annual pediatric palliative research symposium.

The keynote and Special Grand Rounds Guest Speaker is Dr. Joanne Wolfe, Division Chief of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Director of Palliative Care at Children's Hospital Boston.

The symposium themes include promoting palliative care at diagnosis of a life threatening illness among the circle of care and family engagement in research.

The full agenda includes Grand Rounds, expert panel, workshop, poster session and parent breakout, Café Scientifica — a workshop of 5 minute presentations on the current state of (exciting) research in pediatric palliative care - and a break out session for parents to connect and a town hall event.

Parent registrations are complimentary and here is the symposium summary from the temporary event website:

This third annual Paediatric Palliative Care Symposium will focus on themes related to: addressing the issues of early integration into palliative care, how to approach parents to participate in research in palliative care, and more.

Highlights will include our Grand Rounds key note speaker, Joanne Wolfe, from Boston Children's Hospital, oral and poster presentations by TRAC-PG scientists and clinicians, an expert panel debate regarding the successes and challenges to providing hospital based palliative care to children and a workshop/panel discussion with parents and health care providers.

This symposium is open to parents, family members, SickKids and community clinicians and researchers, volunteers and decision makers. Parents will have the opportunity to participate in this symposium with other parents who have shared interests in networking, supporting each other, research, volunteering, and philanthropy.

Optimizing Patient Safety Through IT Solutions: A Case Study

noreply@blogger.com (Sasha Bella Forever) — Wed, 29 Jun 2011 18:57:00 +0000

David Mosher presented to SickKids Patient Safety Symposium a personal case study titled "Optimizing Patient Safety through IT Solutions" based on his experience as the father of a child with complex care needs and a parent volunteer on SickKids family council and as a health care expert tasked with large scale mobile health care initiatives.

David describes his daughter as complex medically both in needs and in treatment concerns.

She also has an extremely wide circle of care extending to more than 10 sites at more than 5 different institutions.

As a father and IT professional, David then offers research and thoughts as to how technology adoption will improve the quality of information at the heart of patient safety.

Quality Information is Critical to Patient Safety

• “The majority of the key informants believed that the fundamental issue in patient safety and primary care is patient care information.”
(Kinston-Reichers et al., Cdn Patient Safety Institute)

• “During 32% of ER visits, missing information delays care”
(Stiell et al., 2004)

Increased Patient Safety Risk Factors

Can my wife and I get the answers right when under extreme stress?

What if we’re not there?

Very complex medical history/rare condition

My child cannot provide verbal feedback

Outbursts increase clinician stress, distracts and interrupts communication

Electronic Health Records are part of the solution

An E.H.R. provides a cross-provider, trusted healthcare record

But……….

• Is the info accessible at the point of care?
• Does it slow down the treatment process in E.R.?
• Is the information used to its potential?

Next Generation Mobile Devices Overcome the Access Barrier

- Light
- 10 hour battery life
- Intuitive user interface
- High resolution
- Built in cameras
- WiFi and 3G/4G
- Secure (no patient data on the device)
- Fast application deployment

Mobile Device Adoption is an unstoppable force in Healthcare

Clinical adoption of mobile devices is rising

• 72% of US Physicians use smartphones (Manhattan Research 2010)
• 52% look up patient information several times a day (Manhattan Research 2010)
• 50% of US physicians will have iPads by 2012 (Chilmark Research)
• 70% of Healthcare respondents plan to buy an iPad or similar device in the next year (HIMSS/BoxTone 2010 CompTIA 2010)
• 86% of Physicians with smartphones are interested in accessing EMR data by them (PwC 2010)

Conclusion

• The right information being available at the right time is crucial to patient safety

• E.H.R.s must be combined with mobile devices to have a meaningful impact

• IT can reduce the likelihood of errors that outside factors could introduce

David, thanks for sharing your presentation with us and for contributing to patient safety and family centered care at SickKids.

SickKids free family wireless goes live Mon June 20

noreply@blogger.com (Sasha Bella Forever) — Mon, 20 Jun 2011 04:26:00 +0000

On Friday, an Information Management and Technology director confirmed the imminent public launch of SickKidsWifi.

I am pleased to announce that free wireless access to the Internet for patients, families and visitors using their own mobile devices will be launched on Monday June 20th – a service that has been much sought after by those who come to SickKids.

You will now be able to connect to SickKidsWiFi via any wifi enabled device such as laptop, smartphone, iPad, iPod, PlayBook etc. The entire hospital is not covered however there will be coverage most importantly in patient rooms, the Atrium and the Gerard street food court, along with the Main Floor of Black, Burton and Hill wings and the first floor Library and North Conference Room.

There will be announcements this week in Daily News, This Week and Dear Parent Letters will be distributed to the units with a one page handout for our families.

Looking forward to deactivating my roaming mobile connection and turning on SickKids wifi next visit!

2011 Sasha Bella awards for Family Centred Care Excellence

noreply@blogger.com (Sasha Bella Forever) — Tue, 26 Apr 2011 21:33:00 +0000

The 2011 recipients of the Sasha Bella Fund awards for Excellence in Family Centered Care in the Labatt Family Heart Centre are occupational therapist Lisa Hoffman and nurse practitioner Judith Wilson. Judith and Lisa are the most experienced staff to be nominated and as long serving heart center staff were anchors in Sasha's care from 2004-2006.

Lisa's home visits during Sasha's first year and a half helped her with every step of skills development from rollover to sit, crawl, walking hand over hand, first unaided steps and, a biggie, eating. Sasha's success with these basics were our good times and a huge confidence boost that Sasha could develop and we could help her and all live and love together for an unknown amount of time.

Judith was nurse practitioner during Sasha's catheterization visits and her final five month stay and the combination of her gentle way and calm communication and extreme nursing competence were integral to us staying positive and focused and learning to feel we could care for Sasha even though she had an extreme heart and liver condition.

The hard work of health care professionals like Judith and Lisa make family centered care appear effortless. Not surprisingly, both visited our home after Sasha died, among about a dozen 4D staff who did so. Sasha touched hundreds of staff at SickKids but these were stars among her closest circle of care and I was so happy to see them recognized.

Judith's nomination letter described her as "assertive, expedient and accurate during clinical crises and her 'straight shooter' style and positive, forward thinking are to be admired" and that she engages in "truly loving and kind acts" such as the support of a seven year old Japanese heart patient and her family. With the child immobile and in precarious health and the family dependent on an interpreter, the highlight of her day was a visit to Tim Hortons with Judith for an iced expresso. Judith took her with multiple IVs on a wheelchair to see Santa at the Eaton Centre and then a stop at Nathan Phillips Square to watch skaters. A several hour winter transport with a child in precarious health is typically not done for fun and this was a unique family experience that took great nursing skill.

As a lovely first, Lisa Hoffman's nomination was from a nursing colleague for care of her child and family and Carrie's words as a mom and nurse educator resonate strongly as we celebrate family centered care.

"When our family reflects on what Lisa did for us, we see that she really listened, she trusted us, she helped ease the burden of uncertainty and she developed a plan of care that was doable and that worked for my daughter and our family. Lisa was the first and only health care professional who presented the big picture to us in a meaningful way."

Carrie credits "meltable-solids" as allowing her daughter to eat finger foods today and "tearless tolerable exercises which mimicked playtime" as life changers for her child and family.

Lisa and Judith, thanks for what you do so well each day for sick kids.

Also a big thanks to the many staff who have made time over five years for work to circulate, nominate, select, contact recipients and confirm nursing award day arrangements.

Judith received a rose from Nursing and a framed award from the Sasha Bella Fund after Nursing Excellence Awards on May 7 and Lisa's award will be at a future event of her and Rehab's choosing.

Exciting Patient Safety Symposium - June 9, 2011

noreply@blogger.com (Sasha Bella Forever) — Mon, 25 Apr 2011 21:31:00 +0000

SickKids 7th Annual Patient Safety Symposium on June 9, 2011 offers an exciting lineup. Here is a taste of the day from the titles of the presentations: adverse events in hospitalized children in Canada, UK Paediatric Trigger Tool, teamwork and communication, system wide learning from critical events and improving parent provider communication. Breakout sessions are on trigger tools, simulation, targeting zero and family council (FCCAC) parent David Mosher with Drs Niraj Mistry and Stephen Porter on 'Optimizing Patient Safety Through IT Solutions'.

The number and quality of SickKids patient safety presenters speaks to the energy and committment of staff across the hospital to tackle safety and include parents in this critical initiative. Here is the symposium's online agenda.

A testimony from the CCCU

noreply@blogger.com (Sasha Bella Forever) — Mon, 25 Apr 2011 06:08:00 +0000

During a break in the liver family day I bumped into the clinical director of the Critical Care Unit in the Atrium. He was one of two of Sasha's most senior helpers in CCCU and we had our most challenging conversation about Sasha and care with him about a week into her ICU stay. He sent me this note which I have lightly edited as to the positive impact of the ICU's family communication program which the Sasha Bella Fund For Family-Centered Care supported in 2010 and also to the continued relevance of family supports.

I recently dealt with a very challenging case with team/communication issues, some errors and a complex ICU stay. The child died and I have been helping the mother get through the post death trauma. I stressed the things that are in place to deal with mitigating error, reporting and review of error and how we create an environment of no blame and encourage individuals to self report in a constructive way. I told her of our experience with getting members of our staff trained in Crucial Confrontations and, further, being trained as trainers. I am one of 2 physicians here who have done this. After I told her that another family had been instrumental in this happening, she asked me to recognize that family. So here it is.