UC Irvine

Background: Survivors of single ventricle heart disease (SVHD) must cope with challenges related to physical health, neurodevelopmental delays, and psychosocial sequelae of SVHD, which also affect academic achievement and social relationships. Despite these challenges, SVHD survivors often rate their health and quality of life (QOL) relatively highly. However, there are few studies that examine the life experiences of adolescents with SVHD.

Purpose: The purpose of this study was to examine the lived experiences of school, social relationships and healthcare in adolescents with SVHD.

Methods: A descriptive phenomenological methodology was employed, utilizing interviews of adolescents who had previously undergone a Fontan procedure for SVHD. The interviews were analyzed using the phenomenological analysis technique developed by Giorgi. Participants also completed a demographic and clinical information form that included one-dimensional questions related to overall health, changes in health, and overall QOL. A medical chart review was completed to obtain information on medical and surgical history and current status.

Results: Fourteen adolescents (ages 14 to 19 years, seven males) participated. The interviews lasted from 24 to 81 minutes. Self-reported health was rated as excellent to good in 12/14 participants and median self-reported QOL was 87.5 on a 0 to 100 scale. Seven themes emerged from the interviews, including 1) I am learning to take care of myself; 2) I have some limitations, but don’t assume: dealing with ableism; 3) I see myself as healthy; 4) I have big plans for the future, but there is also health uncertainty; 5) School can be a challenge; 6) My QOL is very good, and: 7) I have lots of healthcare experiences. The overall essence from these themes was “Thriving in the Face of Uncertainty.”

Conclusions: Adolescents with SVHD identified their physical limitations, school challenges, and the need to learn self-care in the face of an uncertain future related to their health. Despite these physical and psychosocial limitations, they consider themselves healthy with a high QOL and remain optimistic for the future, drawing strength from family, friend, teachers, and healthcare providers for support.