Singing in the rain - Music therapy and child life provide individualized coping strategies for emotional stresses of pediatric heart failure and transplant
Alyssa Geis1, Whitney Hewlett1, Andrew Well1,2, Lauren D. Glass1,3, Carlos M. Mery1,2, Charles D. Fraser Jr1,2, Chesney D. Castleberry1,3.
1Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, United States; 2Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, United States; 3Department of Pediatrics, Dell Medical School at the University of Texas at Austin, Austin, TX, United States
Introduction: Heart failure and the transplantation process have a considerable impact on the emotional health of pediatric patients. We present a case on the impact of child life and music therapy in promoting enhanced coping in this setting. A 12-year-old with Heterotaxy Syndrome and complex congenital heart disease, status post Fontan palliation presented to our institution with severe atrioventricular valve regurgitation. The patient experienced cardiac arrest requiring extracorporeal membrane oxygenation and subsequent transition to a durable ventricular assist device. The patient was discharged home on hospital day 111, listed for transplant 9 months post-discharge and underwent successful cardiac transplantation 4 months later. The patient experienced both medical complications and emotional challenges. As part of the interdisciplinary care team, certified child life specialists (CCLS) and board-certified music therapists (MT-BC) can provide socioemotional support to assist with cognitive and emotional processing of challenging healthcare experiences to improve coping and outcomes.
Methods: This heart center interdisciplinary team, comprises psychology, social work, child life, and therapies. The CCLS met the patient at admission and completed an assessment including personal preferences and past medical experiences. The patient identified interest in rock music and electric guitar and discussed a diagnosis of generalized anxiety disorder and its intersection with medical anxiety. The patient expressed fear about negative medical events, lack of control and the risk of death. Given this, the CCLS consulted the MT-BC for anxiety reduction and enhanced coping.
Results: The patient collaborated with MT-BC in therapeutic songwriting. Songwriting provided a structure to express anxieties, practice coping strategies and reinforce self-expression. The patient was able to record an original song – titled “I Will Be Invincible.” Therapeutic recording provided opportunities to control musical components (tempo, volume, instrumentation, etc.), supporting increased opportunities for choice and control, which were limited throughout medical care. The patient listened to the song during stressful procedures and later coordinated a performance of the song for the medical staff. These interventions provided personalized psychosocial care which demonstrated a positive impact on the patient’s overall coping through the transplantation process and continued outpatient treatment.
Conclusion: Extended hospitalizations in children and adolescents, are common in the settings of heart failure and cardiac transplantation, can lead to negative psychological impacts. CCLS and MT-BC provide critical interventions and support to give patients and families emotionally safe opportunities to express and process emotions, build confidence, reduce anxiety, identify and implement coping techniques, and further engage in care.