"Nothing to hide and nothing to advertise". Managing disease-related information

Abstract

The purpose of this study was to explore the process of managing disease-related information through various developmental stages from the inside perspective of those who live with a long-term health condition. The retrospective, longitudinal, life history method was used to generate a descriptive theory from accounts constructed with 21 informants: 10 adolescents and young adults with cystic fibrosis (CF) aged 16 to 25 years, and 11 of their significant family members. People chose a specific telling strategy according to the perceived ability of the audience to deal with the information and the situational context. Four strategies of managing disease-related information emerged: visibility, direct telling, silent telling, and concealment. The informants frequently chose information management strategies that enabled an ordinary style of living. These strategies neither reflect feelings of shame nor of pride, as it is suggested in the existing literature. Implications for theory, health care practice, and further research are discussed.