Mental Health Concerns in Congenital Heart Disease

Mental Health Concerns in Congenital Heart Disease

Julie Miller: Hi, this is Julie Miller from CHOP's Family Advisory Council with the Cardiac Center. And I'm here today with a team of our psychology experts that we had a privilege of just watching a great panel that they brought us through on kind of understanding how different developmental milestones and different psychological issues, that may arise that we should be watching out for as parents. I know it's a topic that you're all really interested in. I'd like to turn over and introduce the panel.

Nadine Kasparian, PhD, MAPS: Hi, I'm Nadine Kasparian. I'm a psychologist and founding director of our Center for Heart Disease and Mental Health at Cincinnati Children's Hospital.

Abby Demianczyk, PhD: Hi, I'm Abby Demianczyk. I am the Co Director of Neurodevelopment and Psychology Services at Cleveland Clinic Children's.

Kelly Wolfe, PhD: Hi, I'm Kelly Wolfe. I'm a neuropsychologist and the director of our Cardiac Neurodevelopmental Program at Children's Hospital Colorado.

Melissa Cousino, PhD: And I'm Melissa Cousino, also a psychologist and director of Psychosocial Services and Research, or M-COPE Program, at C. S. Mott Children's Hospital at the University of Michigan.

Nicole Snyder: And I will be asking questions alongside Julie. I'm Nicole Snyder, another member of the Cardiac Center Family Advisory Council.

Julie Miller: Great. So I wanted to start us off, there's so much content we could probably talk about, but just to talk about as our kids, either they're babies through, in my case, my son is 21, looking at some key things as parents we should be looking for with our children's psychological development, any watchouts you might want to be looking for.

Abby Demianczyk, PhD: So one thing that I think about as an early sign for psychological concerns could be some impact or change in function. So thinking about the things that your child or young adult or teen is, should be doing or does throughout the day, eating, sleeping, hanging out with friends, their downtime, the things they typically enjoy.

Any change in that could be an indication that maybe something is going on for them from a mental health concern, whether it's anxiety or depression or a social situation that's coming up they haven't shared. That can be an early warning sign that maybe something's going on and that might be worth talking to someone about.

Because we all have blips or ups and downs, but when it starts to impact our day to day function, that might be a sign that maybe it's worthwhile.

Kelly Wolfe, PhD: I would add to that, Abby, in terms of kind of neurodevelopment across the lifespan, thinking about taking your child in for their regular neurodevelopmental checkups, just as you do their cardiology checkups.

So CNOC, which is the Cardiac Neurodevelopmental Outcome Collaborative, has recommended time points for neurodevelopmental assessment. But that said, if you have a concern, or if your child's teachers come to you or other providers working with your child and are wondering about their attention or their reading or, you know, any aspect of their neurodevelopment, do not hesitate.

You don't have to wait till the next time point to come in. Ask your child's cardiologist or neuropsychologist, if you're linked with them, for a referral to get that checked out. Because what we know is that there are a lot of really, really wonderful neurodevelopmental interventions out there that can help with attention and learning, and executive functioning, but the earlier the better. And on the other side, it's also never too late to start intervention.

Melissa Cousino, PhD: And with heart disease and mental health, so many of the symptoms can be the same and can overlap. So things as a psychologist that I may think about are, you know, difficulties, sleeping, fatigue, not wanting to eat as much, chest tightness. Those things we see in anxiety and in depression. And so I think it's important to not always assume it's the heart, but have a conversation with your cardiac team and say, you know, really want to look into this. Is there someone in our program that we can talk to about these symptoms?

There's no harm in asking or meeting with a psychologist or a social worker and being proactive and getting them engaged early can be really helpful.

Nicole Snyder: And then moving on to resources for parents who might be struggling with mental health, as well as resources for children, what can parents do and where can they go to find these resources?

Nadine Kasparian, PhD, MAPS: That's an excellent question. And the way we often think about it is like an onion skin. There are rings and rings and rings and layers and layers and layers of support that people can access and utilize whether that's information and education, and we hope that that is a universal source of support in terms of exactly what my colleagues have just mentioned, the signs and signals to look out for. Having a good sense of that.

But also your cardiac team, any member of your cardiac team, can be an important source of support and resource. Psychologists and the psychosocial team is incredibly important. But also beyond that, patient and family advocacy groups, and we have many of those around the country that are incredible champions in terms of support and resources.

Some of those include Conquering CHD, Mended Little Hearts, Sisters by Heart. There are many of those. There's also a number of networks led by patients, parents, family members, providers and researchers and other advocates that come together that might include the FONTAN Outcomes Network, MPCQIC, Action, a whole range of those networks.

They offer a number of different types of resources, whether that's connection chats to meet other patients and families, and opportunities to get involved and also to build community and a sense of community is incredibly important. And then also with school, there's a range of different supports, and resources at school too. But I might ask other colleagues what they think.

Kelly Wolfe, PhD: Absolutely. I think you've outcovered it.

Nicole Snyder: Might that be different at all for the parent who might be struggling with their own PTSD or trauma related to their child's diagnosis?

Abby Demianczyk, PhD: Sure. Thinking like very practically, how do I find a provider? There are many great resources online that can help you search because I think it can feel very overwhelming and it can be hard to identify someone. Just a few examples are websites like psychologytoday. com or therapydet.com where you can go in and search in your area by location, by provider type, by insurance type, by type of concern. Or you can of course always call your insurance card as well. And then primary care practices tend to be a good resource as well to connect with community providers or community referrals that might be accessible to families.

Melissa Cousino, PhD: There's also a new resource that's coming out that I'm super excited about. So we are all members of the Society of Pediatric Psychology, which is a society of psychologists who work in pediatric health centers, with children and families with chronic medical conditions. And within the Society of Pediatric Psychology, there's this new special interest group called the Caregiver Wellbeing Special Interest Group, and they are putting together incredible resources for parents.

So they actually just put out a two page sheet on how to find a mental health provider for your child with chronic illness. They have an Instagram page where they're posting tips for, really focused on, parent caregivers of children with chronic medical conditions. So that would certainly be a resource.

I would encourage parents to follow. It's psychology led and driven. And I think they're bringing together some of the best resources out there for parents

Nadine Kasparian, PhD, MAPS: The only other one that we should mention is the Cardiac Neurodevelopmental Outcome Collaborative focused specifically on mental health and neurodevelopmental care across the lifespan in all forms of childhood onset heart disease.

Julie Miller: Thank you. That's wonderful. Those are outstanding resources and we really appreciate you sharing those with us and our families. One thing that I felt the spirit of throughout this conference is really innovation and things that your people are excited about across every topic.

Is there anything that you've seen recently that you're really excited about that you see either today or on the horizon that you'd like to share with some of our parents?

Kelly Wolfe, PhD: One thing I'm super excited about is all of the research on exercise, especially in some of our most complex cardiac populations.

We know that exercise is good, not only for your heart, but in other populations that have white matter differences in their brain. Exercise has actually been shown to help with neurogenesis and repair of some of that white matter damage. Not to mention its benefits for mental health, right? For depression, anxiety, self esteem, and things like that.

So the research is still very nascent. I know that there is a group in Australia doing a randomized controlled trial with exercise, as well as looking at neurocognitive and neuroimaging benchmarks and outcomes. But that's one of the things I'm most excited to see the results of.

Melissa Cousino, PhD: A few areas I'm really excited about is the role of resiliency in cardiac health.

I mean, we think of our patients and families as being resilient, as finding resiliency in the hardest of times. And so the ability to harness that, to teach it, to build it and how that may impact physical health outcomes and cardiac health outcomes. I also am really excited about a personal line of research.

I've always been really interested in how we communicate with children, teens and young adults about their heart disease, about difficult decisions in pediatrics. We tend to think a lot about how we communicate with parents. But really, what is the role of the child, of the teen? What are their preferences for their medical decision making?

How much do they want to be engaged? And how does that actually impact their outcome? So we have a study coming out soon where we asked 12 to 24 year olds with advanced heart disease, and their parent caregiver, about decision making preferences. Who should make the decision. What things they would want to talk about.

And even as a parent myself, you know, I can say like, what our young people wanted and what their parents thought they wanted were different. I think that's a really important and exciting area for us to move. How do we help teach our cardiology clinicians, our parents, our caregivers to really engage our young people themselves in their health care and meet their health care needs in terms of what they want to know.

Nadine Kasparian, PhD, MAPS: And Kelly mentioned it's never too early to offer supporting care and I'm particularly passionate about psychological interventions offered during pregnancy after fetal cardiac diagnosis. And so I have the really good fortune of leading a multi center randomized control trial, testing the effects of a psychological intervention offered during pregnancy called GPS for the Heart Journey.

And so really being able to offer wraparound psychological care throughout the remainder of the pregnancy, after fetal cardiac diagnosis in those early postnatal weeks to be able to try to buffer parents from the stress and distress associated with congenital heart disease.

And also really importantly, proactively support the developing parent-baby bond and really focus on bonding and attachment in those early weeks.

Nicole Snyder: And then just one last question for each of you to answer. What is one piece of advice that you might offer to families in their congenital heart disease journey?

Abby Demianczyk, PhD: I would just say don't be afraid to reach out. I think there is no concern that is too big or too small to reach out about and connect with. We, and other members of your team, are here to help support you on that journey.

Kelly Wolfe, PhD: Absolutely. That could probably sum up all of our advice.

Melissa Cousino, PhD: I often tell patients and families and parents that these feelings you may be having, in response to a diagnosis, a hospitalization, a setback, they are normal responses to the abnormal, you know, the sadness, the anger, the guilt, the worry. Those are normal feelings. We are supposed to have those feelings.

And so really validating for them, validating it for their child, normalizing it, so then that provides an openness to reaching out.

Nicole Snyder: That's really powerful. Like, I don't know, Julie, if you just felt that emotion when she said that, but I needed to hear that. So thank you. And I'm sure everybody else is going to appreciate that too. So.

Julie Miller: And I just wanted to thank each of you for taking a few minutes out of your very busy day today to consult and talk with us again. This is so valued by our heart families who really need this information pretty much now more than ever. So thank you again for all your time.