It’s no surprise that children diagnosed with cardiac disease often experience anxiety or depression. Their caregivers may also struggle with mental health as they navigate treatment. Dr. Erica Sood and Dr. Joselyn Kenowitz, both pediatric psychologists at the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware emphasize the importance of providing mental health support in cardiac settings to address challenges early and prevent worsening issues. Their work highlights the need for comprehensive mental health programs from diagnosis through young adulthood, with initiatives like HEARTPrep for prenatal support and the Milestones Program to address developmental and mental health needs. The goal is to ensure families are prepared for the mental health impacts of congenital heart disease (CHD) and have access to necessary resources.
1. How is mental health connected to cardiac care?
Dr. Sood: The stress of cardiac care in the hospital and at home can affect the mental health of both patients and their family members. Many patients and caregivers have symptoms of anxiety, depression or PTSD at some point in their cardiac journey. Unfortunately, patients who struggle with mental health often have difficulties caring for their physical health. Patients and family members who get the support they need can better handle the stress of cardiac care, which can ultimately lead to better overall health and well-being.
2. Can you describe how your work has given you firsthand insight into the challenges faced by CHD patients and their families?
Dr. Sood: Through my clinical care and research at Nemours Children’s Health, I have learned that many aspects of the CHD journey can be stressful and traumatic for patients, caregivers and siblings. My involvement with community organizations like Conquering CHD and Mended Little Hearts has further connected me to patients and family members and their lived experiences. I value working in partnership with patients and family members to improve mental health care for this community.
Dr. Kenowitz: My work with patients and families has shown me that not only does CHD impact the entire family, but it impacts so much of their day-to-day life as well. It’s not over when a family leaves the hospital. Whether it is learning to administer medications at home, navigating medical appointments and the healthcare system, or communicating with schools about their child’s learning needs, our families are constantly being asked to take on new challenges and new roles. It is truly an honor to be allowed into a family’s life during some of these incredibly challenging moments and to learn from them.
3. What are the benefits of access to mental health care in a cardiac setting?
Dr. Sood: Accessing mental health care can be challenging, and most patients and family members don’t receive the mental health support they need. When they do access mental health care, it is usually to address a major problem, rather than to prevent small difficulties from getting worse. By offering mental health care in a cardiac setting, we can prepare families for the mental health impact of CHD, provide tips and tools for coping, identify and address difficulties before they become a major problem, and reduce barriers to accessing mental health care.
4. What will the future conversation around mental health and CHD look like?
Dr. Sood: I believe that future conversations will start with a shared understanding that mental health is a necessary part of cardiac health and that mental health care needs to be provided in a proactive and preventative way. I hope we soon get to the point where every family is prepared for the mental health impact of CHD and knows what “red flags” to look for and how to find help and support. I hope we have comprehensive support programs that have been tested through research studies and can be used across hospitals to support all families affected by CHD.
5. Is there any new and exciting research or upcoming news you’d like to share?
Dr. Sood: There are several research studies underway focused on developing and testing mental health support programs for patients or caregivers affected by CHD. Some of these start at the time of CHD diagnosis, before the baby is even born. We know that mental health care needs to be offered early and often, including during pregnancy. At Nemours, we have partnered with parents to design and pilot a prenatal support program called HEARTPrep.
Dr. Kenowitz: We are also excited about recent expansions to our clinical services. Our newly developed Milestones Program aims to comprehensively address the developmental and mental health needs of our cardiac patients and their families as well as provide educational opportunities for providers, patients and families. We are grateful to the patients, families and staff who have provided feedback and inspired us to expand our program and team to better serve our patients and families.
6. How can mental health services benefit patients and their families throughout their cardiac journey?
Dr. Kenowitz: Our program provides support to patients and families from the time of cardiac diagnosis through young adulthood. Our services include supporting family members while their infant is hospitalized or going through surgery as well as providing outpatient psychotherapy to patients for emotional or behavioral challenges. We also provide support around development and learning through our developmental follow-up program, which begins at the age of 6 months. As patients get older, we can also support the transition to adolescence and young adulthood, which can provide unique challenges for someone with complex medical needs. Providing support across ages and settings has allowed us to establish strong and trusting relationships with patients and families, who know they can access our care whenever they need it.
