Eighth International Conference on Health, Wellness & Society

Abstract

Chronic illness affects 1 out of every 4 children within the United States (Compas, Jasper, Dunn, & Rodriguez, 2012). Often children with chronic illnesses experience multiple doctor appointments, hospitalizations, and medical treatments. The experience of having a chronic illness is emotionally and psychologically taxing on both children and their families. In addition to the medical stressors of living with a chronic illness, school days may be missed, limitations may be placed on certain activities, and children may perceive themselves as different from their peers. Children with Marfan Syndrome, a genetic disease that affects the connective tissue, may be psychologically impacted by their illness in multiple ways. While there is a good amount of literature available of the medical sequelae of Marfan, less is known about the psychological aspects of this disorder in children. A retrospective, qualitative study was conducted to understand the coping mechanisms children with Marfan utilize in managing their disorder. Young adults who have Marfan Syndrome were interviewed about their experiences coping with their illness as a child, and interviews were analyzed to identify key themes. These themes were then used to guide the development of a therapeutic workbook for children with Marfan. This talk will present findings regarding what young adults with Marfan Syndrome struggled with in managing their chronic illness in childhood, and describe and present the therapeutic workbook.