GrantsListItemDisplay

Title My Heart 2.0
AAP Grant ID 2707
Project Year 2021
City & State Fresno, CA
Program Name CATCH Resident
Topic Mental Health (LHI)
Program Description

​With My Heart 2.0, we plan to educate and create a community for adolescents with congenital heart disease (CHD); a place to laugh, play and grow with individuals who understand what it’s like to grow up with a transformed, upgraded heart (hence My Heart 2.0). CHD occurs in 1 out of every 100 live births, and with improving medicine and surgeries, these babies are thriving and many are now adolescents. Adolescence is a difficult transition and growing period. Adding a chronic disease in the mix makes it even more difficult. Research shows that there is an increased risk of new or an exacerbation of an already existing psychological disorder in adolescents in chronic diseases. There is an increased incidence of mood and anxiety disorders among adolescents with CHD. In addition, more complex heart disease correlates with a higher risk of mental illness. The outcomes this program is dedicated to increasing education, understanding of their disease while improving mental health outcomes in adolescents with CHD.  There are currently several communities for parents of children with CHD, even for adults with CHD, but the opportunities for adolescents to connect with others who understand them are few, especially in the wake of a global pandemic. Bottom line: there aren’t enough support groups for this community with CHD. Our plan with My Heart 2.0 is to meet once every two weeks over zoom. We will give participants two surveys before their first meeting, and then again at 3 months, 6 months and 12 months to track the progress. The first survey is the validated Leuven Knowledge Questionnaire for Congenital Heart Disease to assess the frequency of patients’ knowledge about their disease, it’s treatment, and about preventative measures, the second is our survey that we are working to validate. At the beginning of meetings, we will play games, win prizes, and create community. The last 10 minutes, we will talk about an important topic related to CHD. For example if the topic is endocarditis, we will briefly discuss what it is, why it’s important, make sure participants are maintaining good oral hygiene, and provide supplies if needed. Other topics include discussing mental health, why cardiologists do procedures like echos or stress tests, and what the anatomy of their specific heart defect looks like.  My Heart 2.0 seeks to empower adolescents to understand and own their disease, promote mental health in this vulnerable population, and help them understand the importance of preventative medicine, especially with their pre-existing condition. Community is more important now than ever, as we’re meant for human connection, but have been forced to be isolated secondary to the devastating COVID-19 pandemic. Our zoom meetings will provide deeply needed community and friendship.  The CATCH grant will enable us to implement this program which we have been working on this past year. It will enable our program to have a bigger impact, reach more adolescents, and provide them with a richer experience.  

Goals

​1) To improve the knowledge and understanding of disease via pre and post intervention survey scores as adolescents continue to join meetings. We are expecting a statistically significant improvement from the pre-survey to the post-survey at at least 3 or 6 months. 

2) Establish a community of adolescents with congenital heart disease so they can grow and confide in one another through their shared experiences. Our goal is to recruit at least 10 participants who attend an average of 12 out of the 15 meetings. 

3) To provide meetings one to two times monthly, with at least 15 meetings total while planning on providing more. We will maintain good follow up with participants through individual and group text messages, social media posts, and the website. When the participants sign up, they will provide their social media feed, phone number and email if they prefer. We will reach out at least two different ways to ensure they remember the times and links to the meetings. We will measure follow up based on whether they responded or not to our invitation. 

AAP District District IX
Institutional Name UCSF-Fresno
Contact 1 Alexandra Curry, DO
Contact 2
ID 917