1. Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease
- Author
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Peterson, Jennifer K, Olshansky, Ellen F, Guo, Yuqing, Evangelista, Lorraine S, and Pike, Nancy A
- Subjects
Pediatric ,Schools ,Heart Diseases ,Adolescent ,Uncertainty ,Social Support ,Cardiorespiratory Medicine and Haematology ,Cardiovascular ,academic achievement ,peer relationships ,Heart Disease ,Good Health and Well Being ,Cardiovascular System & Hematology ,Behavioral and Social Science ,Humans ,Interpersonal Relations ,Fontan procedure ,qualitative research - Abstract
BackgroundSurvivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.MethodsA descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.ResultsFourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including "Don't assume": Pervasive ableism; "The elephant in the room": Uncertain future; "Everyone finds something to pick on": Bullying at school; "They know what I have been through": Social support. The overall essence generated from the data was "optimism despite profound uncertainty."ConclusionsAdolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect "optimism despite profound uncertainty."
- Published
- 2021