“It’s what I have, it’s not who I am”: A qualitative study of social support in education/employment settings and transition readiness of young adults with end-stage renal disease

Abstract

This study investigated the role of social support in self-management within educa-tion/employment settings for young adults (YA) with end-stage renal disease (ESRD) as well as barriers and facilitators to social support formation. Nineteen YA with ESRD (mean age 24 years, 10 males, 9 African American) recruited from a pediatric nephrology clinic in the Southeast United States completed in-person semi-structured interviews. The grounded theory was used to analyze transcribed interviews to identify emergent themes. Absences hindered participants’ school/work attendance and performance. Social support was necessary for illness management and success in academic/vocational settings. Facilitators to establishing support included self-awareness and view of disclosure as a way to access accommodations. Barriers included fear of judgment, job loss, and the belief that the condition was too personal to disclose. Educators and employers must acknowledge the needs of YA with ESRD to promote development and educational/vocational success. Fear of disclosure and poor disease self-management interferes with accessing social support. Communication skills and autonomy in patients’ medical and personal lives can promote success in education and employment settings.