The emotional experience of adults with Cushing’s syndrome in Argentina

Abstract

Cushing’s syndrome is a rare disease resulting from prolonged exposure of the body to chronic hypercortisolism. Its incidence worldwide is 0.7 to 2.4 cases per million per year. It is considered potentially lethal since if it is not treated correctly the estimated survival is five years in 50% of cases. The goal of this exploratory qualitative study with a narrative design was to understand the emotional experience of those who suffer from Cushing’s Syndrome. A purposive sampling was carried out for which five participants with a Cushing diagnosis as the main inclusion criterion were selected. The semi-structured narrative interview, artistic representation, and field notes were used as data collection instruments. A thematic analysis was carried out for data analysis, which revealed that the participants’ emotional experience in this study comprised six stages: disorientation and loneliness, anger and disgust, hopelessness, adaptation, resurgence, and solidarity empowerment. These findings allow us to propose a model that describes the emotional experience of participants with Cushing’s syndrome, which constitutes the main contribution of the research.