INTRODUCTION: Necrotizing soft tissue infection (NSTI) is a severe, life-threatening condition requiring immediate diagnosis and treatment to avoid widespread tissue destruction and death. Current research seeks to explain the complex interaction between patient and disease agent, whereas only few studies have addressed the patient perspective.

OBJECTIVE: The present study aimed to describe the patient experience of NSTI in the first six months after diagnosis.

METHODS: The study had a qualitative design with patient involvement. We interviewed 27 NSTI survivors at six months after diagnosis and applied content analysis to capture their experiences. Patients were recruited from two referral centers in Sweden and one in Denmark.

FINDINGS: We identified three categories representing chronological stages of the illness trajectory depicting pivotal patient experiences: regaining awareness in the intensive care unit, transitioning to the ward, and returning home to normal life. Fear of infection or reinfection permeated all stages of the trajectory. Each stage was characterized by ambivalence: at first the relief of being alive and distress of serious illness, then the relief of independence and distress of abandonment, and finally the relief of being home and distress of still being dependent on others.

CONCLUSION: Fear of infection and reinfection during and after hospitalization characterized lives of NSTI survivors and their family. This fear was potentially debilitating in daily life, working life and social life. Healthcare professionals need to be aware of these modifiable factors to help alleviate the concerns of patient and family throughout the illness trajectory.