The best care? It's personal, 'not prescriptive'
By Louise Kinross
Carolynn Gludish has worked as an inpatient nurse at Holland Bloorview for nine years, primarily with children who are in rehab following catastrophic trauma or painful bone surgeries. She now coordinates our day program. When BLOOM asked for clinicians who would share a candid look at their work in children's rehab, Carolynn stepped up.
BLOOM: Why did you go into nursing?
Carolynn Gludish: I’ve always enjoyed the mystery of the human body and its ability to heal itself. When I was 10 I had a friend who had leukemia and I went to visit her often at SickKids and I liked that the nurses helped her feel better, physically and emotionally. I realized that was the field where I could do that.
BLOOM: Some of the children you work with were healthy until they had a traumatic injury that completely altered their life.
Carolynn Gludish: Yes, for example, one day they were fine and the next they’re not able to move from the neck down. As a nurse, I try to balance the medical piece with the life piece. You have to realize that kids had lives outside this place, and all of a sudden they’re cut off from that life. They’re very aware of what’s still going on outside and that they’re no longer a part of it.
They’re going to have sad days and incredibly depressed days and incredibly hopeful days. And then those days when they realize they will never be the same. A large part of nursing is looking at the person as a whole and trying to figure out where they are today, where their head is at.
If the child is having a day where they’re focused on strengths and the things they want and the hopes they have for their rehab journey, you may push them to work a little bit harder. You may creatively incorporate therapy into the everyday things they do when they’re not in therapy.
If they’re having a down day or a day where it seems hopeless, you’re not going to push them as hard. Doing so will just make them feel less able than they already feel.
BLOOM: What do you do on those days?
Carolynn Gludish: You spend more time listening. You have to acknowledge where they are: the sadness, the depression, the loss. It’s a grief process. You don’t want them to feel that you’re not hearing where they are. Then you try to steer them to where they can maybe find one positive nugget. It could be something about the day or the week. Sometimes ‘life’ is just too big to look at in the moment. And sometimes that’s a great accomplishment for a day.
BLOOM: I assume there are unique issues for families whose child was healthy and then acquired disability through trauma.
Carolynn Gludish: It’s a very steep learning curve for families in that situation. Everything is new and it has to be sorted out quickly. If someone needs their home to be accessible, that process has to be started now, while the parents are still in the stages of dealing with the grief and loss of what was.
BLOOM: How do you support a family when their child's life has been upturned?
Carolynn Gludish: I’m cognizant of the fact that aside from employees who work here, most people don’t want to have to be here. They may be grateful that they’re here, but it’s not their preferred place of choice. I’m also aware that families are balancing what’s going on here with a whole life outside, so there’s a lot on the table that I probably have no idea about.
Sometimes the best support you can give is to listen. And to follow through on what you say you’re going to do—even if it’s as simple as ‘I don’t know the answer, but I’ll get back to you.’
Communication is huge in helping families feel like they’re not in the dark or left out. It's important to figure out what kind of communication works best for each family. Knowing they are overwhelmed, does it help for me to write things down, or do they need to sit and listen? Do they need me to take a photograph of a piece of equipment and then draw arrows and instructions on it to explain how to do something? Or would they like to do a run-through with the equipment with me there?
BLOOM: If you could tell parents one thing, what would it be?
Carolynn Gludish: It’s very individual. It would be individual to each child and family. I come to work every day thinking about what it is that I can do to help facilitate each child’s rehabilitation journey. What can I do to help or further it?
Although as nurses we all have different personalities and styles, really what we want is for the child and family to have the greatest gains when they’re here so that when they go home we know we’ve done our best to set them up for the next steps, whatever they may be.
BLOOM: What advice would you give a nurse just beginning in children’s rehab?
Carolynn Gludish: I would say your technique is like riding a bike. Once you’ve learned how to start an IV or draw blood, you can do that across populations.
The really important piece is understanding the psychosocial aspect of nursing in a rehab hospital. How do you mix that rehab into the child’s activities of daily living and keep it fun? I think humour is huge. You have to be able to laugh together, to enjoy the moment together, so you’re not ‘tasking’ someone to do something, but you’re having a little bit of fun with it.
We do a lot of therapeutic play. Let’s say I have someone who needs to work on fine motor skills. So I get a Wii remote that will be hard for them to hold and use the buttons. 'Let’s play Mario Kart and try, and see how it goes?' I’ll ask. Or we’ll do a puzzle or pick up monkeys out of the barrel.
If they’re working on balance, let’s get out the soccer ball and make sure you have all your gear on and play a little soccer in front of the nursing station. But we’ll play a game where we only kick with one foot.
As a nurse, you can’t be afraid to crack yourself open and let that inner kid out. That’s how you’ll connect and that’s how you’ll get the most enjoyment out of being here on a daily basis. If you can learn to play again, it feels good and you'll tap into a piece of yourself you forgot was there.
You have to be creative, compassionate, thoughtful and patient.
You have to be reflective.
BLOOM: What do you mean?
Carolynn Gludish: You have to sit back and look at yourself at the end of the day and think about what you did, how you did it and if there’s a different or better way to do it. It won’t apply across the board, because every family is different.
I often pop in to ask parents if there’s a different way I could have done something that would make it easier or better for them: ‘How can I make your experience and your child’s experience better?’ It’s the same when I’m teaching students. I ask: ‘Am I facilitating this in a way that works for you and if not, how can I do that?’
BLOOM: Do parents give you constructive feedback?
Carolynn Gludish: Yes. And they mean it constructively. I don’t want to practise nursing in a way that may feel good for me, but not for the parent. It’s very diverse, very personal.
BLOOM: Is there something common parents ask for?
Carolynn Gludish: No. I used to think I would get a consistent answer, but I don’t.
BLOOM: That’s interesting, because I find what can be really supportive and empowering for one parent might not be for another. Two parents could interpret the same thing in different ways. I’m thinking of our family-centred care behaviours, and how we talk about how it’s not respectful to refer to a parent as 'mom.' However, for me personally as a parent, I used to love being referred to as 'mom.' I thought that was the highest compliment. It must be challenging when there isn’t one ‘right’ way to do family-centred care.
Carolynn Gludish: You know how we have that diagram of family-centred care with a circle in the middle and offshoots? Well, I find it’s more like splatter paint than a nice paint-by-number diagram. So this little sunflower works really well for this family, but it hits this family the wrong way.
It’s not prescriptive.
You have people with children who were born with disabilities and people who come in because their child was in a traumatic accident. Just because they can both benefit from family-centred care doesn’t mean that one version of care will apply to both camps. It really won’t.
BLOOM: I like that image of splatter paint. It depicts something much messier and unique to each family.
How do you manage the emotional side of your work? When we ran the narrative group for inpatient nurses, many said they felt like they were the only ones who experienced emotions like regret, grief and guilt. They were surprised to learn that everyone, no matter how much experience they had, had the same feelings.
Carolynn Gludish: On the unit I have a good group of friends and we do talk about this stuff. And we cry about it sometimes. And there are times I’ve cried about it with families because I couldn’t help it. In those moments, I’m always surprised by how much parents appreciate the humanness and the rawness. Sometimes it’s that we're frustrated that we can’t do more. And sometimes when a family talks about what they’re going through, it’s grief for us as well.
I’m a physical person. I need an outlet, so I will ask the parent if they’d like a hug. I play hockey and I swim, and I find that helps. Some people write, some people meditate and some watch TV and zone out. I need to do something. While I’m playing hockey I’m thinking about what it is on my mind and I often come to funny conclusions about why I feel the way I do.
Sometimes I can do something about it and sometimes I can’t, I just have to accept that things are what they are.
BLOOM: What is most rewarding about your work here?
Carolynn Gludish: The kids. For sure. The most rewarding part is watching them as they strive toward and attain the goals that they set for themselves. It doesn’t matter how big or small, the pride that comes with that little milestone for someone who set it themselves is really cool to watch.
BLOOM: If there was one thing you could change about your job, what would it be?
Carolynn Gludish: I’m here because I love being here. Sometimes I feel the business side of things trumps the kids' rehab side of things and I struggle with that. Sometimes, if I could, I would say 'You need to put the dollar sign aside and look at what's happening here, because this is progress, and we'll figure the dollars out later.' That would be the one thing I would change. My hat is off to Julia as she comes down to the unit and she wants to know what's going on, how things work, what feels good for the clients and what nursing needs in terms of supports. I hope it continues.
