Mi Corazon: A Heart to Heart with Patients and Families Living with Devices-Mi Corazon: A Heart to Heart with Patients and Families Living with Devices

Video Transcription

Video Summary

The session, led by moderator Shu Sanatani, gathered healthcare professionals, patients, and families to emphasize the importance of listening to patient experiences, particularly those with cardiac and electrophysiological conditions. The event highlighted two families: Lucy, a nine-year-old with Long QT Syndrome Type 3 and an ICD, and the Mitchell family with a history of NKX 2.5 genetic variant, including Cadence with hypoplastic left heart syndrome.<br /><br />Lucy shared her daily challenges, like managing medications and interacting with peers who may not understand her condition, while her mother emphasized needing resources to navigate school and social situations. The Mitchell family delved into issues surrounding transitioning to adult care, with Cadence expressing the stark contrast between the supportive pediatric environment and more clinical adult healthcare settings.<br /><br />Dr. Lauren Schneider, a psychiatrist, discussed the critical need for embedded mental health support in cardiology clinics to help families through these transitions. Although some centers have achieved this, accessibility remains limited, prompting discussions on utilizing local mental health resources and involving primary care and community networks for support.<br /><br />Audience members, including healthcare workers, sought advice on managing transitions, addressing emotional and psychological needs, and liberalizing exercise restrictions for patients with pacemakers. The families and professionals collectively recognized the importance of personalized care and improved communication strategies to better support patients and their families through their unique healthcare journeys.<br /><br />Overall, the session underscored the value of incorporating patient perspectives into clinical care and the ongoing need for psychological services, individualized transition plans, and practical support for daily living challenges.

Keywords

patient experiences

cardiac conditions

electrophysiological conditions

Long QT Syndrome

NKX 2.5 genetic variant

hypoplastic left heart syndrome

transition to adult care

mental health support

cardiology clinics

personalized care

communication strategies

psychological services

healthcare transitions