Jennifer K Peterson1, Ellen F Olshansky2, Yuqing Guo2, Lorraine S Evangelista3, Nancy A Pike4,5. 1. Johns Hopkins University School of Nursing, Baltimore, MD, USA. 2. Sue and Bill Gross School of Nursing, University of California, Irvine, CA, USA. 3. University of Texas Medical Branch School of Nursing, Galveston, TX, USA. 4. School of Nursing, University of California, Los Angeles, CA, USA. 5. Cardiothoracic Surgery, Children's Hospital, Los Angeles, CA, USA.
Abstract
BACKGROUND: Survivors 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. METHODS: A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review. RESULTS: Fourteen 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." CONCLUSIONS: Adolescents 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."
BACKGROUND: Survivors 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. METHODS: A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review. RESULTS: Fourteen 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." CONCLUSIONS: Adolescents 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."
Entities:
Keywords:
Fontan procedure; academic achievement; peer relationships; qualitative research
Authors: Nancy A Pike; Bhaswati Roy; Ritika Gupta; Sadhana Singh; Mary A Woo; Nancy J Halnon; Alan B Lewis; Rajesh Kumar Journal: J Neurosci Res Date: 2018-01-06 Impact factor: 4.164
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