The Process of Identity Management in Individuals Living with Systemic Scleroderma

Abstract

ABSTRACT The Process of Identity Management in Individuals Living with Systemic Scleroderma Background: People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This, in turn, may limit people’s ability to engage in optimal self-management. Systemic scleroderma is a debilitating, stigmatizing, and life limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with scleroderma. The purpose of this study was to generate a grounded theory of the identity management process in people with systemic scleroderma. Methods: Grounded theory methodology was used to uncover the basic social process of identity management in people living with systemic scleroderma. Fifteen women with systemic scleroderma were recruited using theoretical sampling to ensure representation of differing illness duration and progression. Semi-structured interviews were conducted in person or by phone, transcribed and analyzed using open, selective, and theoretical coding. Rigor was assured through multiple procedures. Results: Four core categories emerged. Adapting to Changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of Self was an internal process where participants lost their sense of self and purpose. Reclaiming Self was the basic social process that involved a deep internal process to include letting go, re-evaluating who they were inside, and realizing that who they were had never changed. Embracing Self was a transformative process that allowed participants to rewrite and rebuild their biographies, live with renewed purpose, intention, gratefulness, and appreciation of their contributions to others. Discussion: Findings suggest that the management of identity was important for understanding how people adapt to life with systemic scleroderma. This study can help nurses better understand how to support patients holistically with the management of systemic scleroderma.