From Caring to Inspiring: Families’ Personal Impact on Clinical Caregivers

From Caring to Inspiring, Families' Personal Impact on Clinical Care Givers

Beth Daddario: Hi, I'm Beth D'Addario. I am part of the Cardiac Family Advisory Council at Children's Hospital of Philadelphia. Very excited to be here at Cardiology 2022 and extremely happy to be able to interview Katie Dodds.

Kathryn Dodds, RN, MSN, CRNP: I'm Katie Dodds. I am the clinical program manager and nurse practitioner for the Fontan FORWARD program at the Children's Hospital of Philadelphia, and I'm part of the faculty at the University of Pennsylvania School of Nursing.

I teach and lecture and mentor in the acute care nurse practitioner program at Penn.

Beth Daddario: Very good. Thank you. I want to say that I thoroughly enjoyed your presentation this morning and I just love to hear you talk about the Fontan because your passion for this population just flies right out of you and it brings me such pride, which brings me to my first question.

Because you educate so many nurses and because they sort of come to the field with their own knowledge base and their own skill set. What becomes the greatest challenge to educate them about the complex congenital heart population?

Kathryn Dodds, RN, MSN, CRNP: The key is to have nurses at the bedside. We need those nurses to take the best possible care of these babies and these children with congenital heart disease and it's complicated and it's complex and it's extremely risky business and there's a very, very steep learning curve.

I worry that by the time they've plateaued and hit a peak, there is a cost emotionally. And so there can be a great deal of turnover in our cardiac intensive care unit and our cardiac care unit. So I think the biggest challenge right now is how to engage nurses early on. That this field of cardiac nursing, can be their passion and then how to keep them passionate about it, at the same time support them emotionally.

Beth Daddario: Very good point. Very good point. Thinking about all the advances that have happened, this is the 25th anniversary and it's been very exciting to hear all that's happened and where we're headed in the future with this field. But it also brings to mind the parents and all the changes that have happened.

What do you find are the challenges in trying to educate the parents? What it means to be the parent of a single ventricle child and what their journey may look like?

Kathryn Dodds, RN, MSN, CRNP: I think that education needs to begin at the time of diagnosis and for many parents, the time of diagnosis, they're still pregnant as early as 17, 18, 19 weeks. That has to be an unthinkable thing to hear and to process.

The education needs to start there, but it needs to then happen again at your next fetal appointment and your next fetal appointment. Even with the education that's occurring there, I don't think anything prepares a mom or a dad for that first moment in the cardiac intensive care unit when they see their baby.

And all those lines and tubes and wires. It is traumatic and has to be extremely frightening. I would like to see us do a better job and be more innovative and creative about strategies that we can use to prepare them even before they deliver the baby. We just had a nursing oral abstract session just before this interview and one of the abstracts, her work was creating an educational program for parents, in particular mothers, who have been given a fetal diagnosis of congenital heart disease. Preparing them for what the lines and tubes look like with the simulation, preparing them to hold the baby, a doll, for the first time, but what the weight of all those lines and tubes and wires and a breathing tube might feel like when they hold their baby.

To try to decrease the stress and she found, her numbers were small, but what she found is she significantly decreased her stress. She had her research group, and then there was a control group and demonstrated significant decrease in stress in her research group. So I would like us to be innovative and start at the very beginning because that is where it starts and then to script out, I think, an educational journey for parents in particular for the patient population that I take care of, which is the single ventricle population, you know, what all of those surgeries look like.

I think if I were a parent, it would be, I'm just going to live from one to the next and in between, put my head in the sand. But I think it would be hard to sleep at night. It would be hard to feel safe again. And what I hear parents and patients talk about is this idea of I'm afraid, I get stressed by coming to clinic appointments, because I'm waiting for you to tell me that something's wrong.

I would like to see us try to make that clinic appointment something that isn't just about surveillance and looking for things to be wrong, but really focusing in on all of the things that are right. I would also like to start the conversation about transition to adult care. When you have congenital heart disease, you as a patient, you have a chronic illness.

And the model for how we care for those patients needs to be more than just the inpatient education, but it needs to be how do you parent a child with congenital heart disease through kindergarten, fifth grade, graduation, college, grad school and beyond. I think there are so many opportunities that we have to be very innovative and creative about how we educate patients and parents and include them, let them have a voice in all of this.

Beth Daddario: Actually, with your answer, two different things pop in my head. One being that walking into the ICU wasn't as stressful as having to hand over my child to the surgeon for the first time as they go into the OR and boy, if they can find a way to make that not so painful, what a stride that would be.

Yes. Because that truly is a painful moment. But on the flip side of that, when my daughter was born 30 years ago, we didn't have near the success we have now. How exciting as a parent who's been through this journey for 30 years, to know that there is concern about how do we transition to adulthood, how do we transition to that adult world and how do we make that a successful game for both the parent and the child.

So it's really exciting that is, it sort of seems like contraindicated, right, that I'm so excited that's a challenge. But truly for a parent, I think it's great that we are thinking about what is their life going to look like as an adult and where are we going to head. So, when you talk about your passion for the single ventricle population and educating and walking with the parents from the fetal development all the way through, you're worried about the bedside nurses and the stress that they have.

Obviously, there's a lot of stress on you as well. How do you work to maintain a healthy work-life balance?

Kathryn Dodds, RN, MSN, CRNP: I'm not sure I have a healthy work life balance. I have an amazing family that's incredibly supportive. I work with a team at CHOP that always makes me push to strive to do better. They are colleagues, they are friends, they are as committed to these patients and these families as I am.

And then it's, you know, things that I tell my patients to do. It's yoga. It's going for a walk every day with my husband. It's finding time to separate a little bit and and take a big breath in and let it go.

Beth Daddario: Absolutely so important. Absolutely so important. As a family who relied on your advice so many times, what advice do you give other parents?

Kathryn Dodds, RN, MSN, CRNP: Be hopeful.

Beth Daddario: Yes.

Kathryn Dodds, RN, MSN, CRNP: Be hopeful. Parent with possibility. Parent with the idea that there's no reason you can't expect college, marriage, family.

Beth Daddario: Wow.

Kathryn Dodds, RN, MSN, CRNP: I think parent with hope.

Beth Daddario: I love it. I love it. Are there any other words of wisdom that you would like to share with the parental population of not just single ventricle, but just cardiac parents in general?

Kathryn Dodds, RN, MSN, CRNP: We often say that we stand on the shoulders of heroes. And I think that typically we thought of that as the surgeons, the intensivists.

Beth Daddario: Right.

Kathryn Dodds, RN, MSN, CRNP: But the real heroes are the parents. Don't make me cry, Beth. Wow. The real heroes are the parents. And there's amazing, amazing patients who are growing into amazing adults.

Beth Daddario: Absolutely.

Kathryn Dodds, RN, MSN, CRNP: And sometimes it is absolutely heartbreaking.

Beth Daddario: Yes.

Kathryn Dodds, RN, MSN, CRNP: Absolutely heartbreaking.

Beth Daddario: True.

Kathryn Dodds, RN, MSN, CRNP: But parent with hope. And grit and resilience and

Beth Daddario: I think I've never heard the word resilience as much since you and I spoke that 11 years ago and it's become a very important word.

Thank you.

Kathryn Dodds, RN, MSN, CRNP: Thank you.

It is a, it is a profound gift to be able to do what I do. I am passionate about these patients and I am passionate about the work. I am so blessed that I get to do something I love doing so much. And it's extremely rare.

Beth Daddario: Yes. Yes.

Kathryn Dodds, RN, MSN, CRNP: It's extremely rare. And I know my daughter looks at me and thinks I want to I want something like that. I want to be as passionate about my work as you are about yours.

Beth Daddario: Right.

Kathryn Dodds, RN, MSN, CRNP: And then I would say the biggest compliment ever was a few weeks ago when a 15 year old girl at the end of the clinic visit, we always end with, so do you have any other questions? And she said to me, yes, I want your job.

Beth Daddario: Oh, how awesome.

Kathryn Dodds, RN, MSN, CRNP: And I said, well, I will hold out and not retire until you are ready and let's talk about where you're going to go to nursing school and I will still be teaching at Penn.

So that's where you'll come and be your MP, but yeah, she wants my job and I thought, how incredible that we're at a point where patients are cardiologists, patients are going to be the clinical program manager or nurse practitioner of Fontan FORWARD in the future.

Beth Daddario: Yeah.

Kathryn Dodds, RN, MSN, CRNP: You know, their voices are being heard in a way today that, I mean, we have Fontan patients who are now in their 30s and 40s and their voice is strong and resilient and full of grit and loud and it should be.

Beth Daddario: That's right.

Kathryn Dodds, RN, MSN, CRNP: And we need to hear them.

Beth Daddario: Yes. And I know that you must have been as moved as I was when we were able to listen and hear the program on the professionals that were born with congenital heart disease and two of them being Fontan. And what hope that does bring for all of us, that's for sure.

But it's only because of practitioners like you that walk this walk with the families that give us the hope. And I just want to thank you so much for spending some time with me today.

Kathryn Dodds, RN, MSN, CRNP: It was an honor. My honor. Thank you.

Beth Daddario: Thank you.