Living with extended-spectrum β-lactamase: a qualitative study of patient experiences.

Background: Extended-spectrum β-lactamase (ESBL) is an enzyme that conveys resistance to most β-lactam antibiotics. Infections caused by bacteria producing ESBL are often difficult to treat because of general multiresistance, and hospital care may be necessary even for nonserious infections.

Methods: The aim of this study was to increase our understanding of how infected individuals perceive their situation as "carriers" of multiresistant bacteria. A modified version of grounded theory was used to analyze 7 open interviews.

Results: The analysis resulted in the core category Being thrown into the scary and unknown without a map and compass. All informants thought they had received no or insufficient information about ESBL from the health care providers. Informants who had been given some information still had many unanswered thoughts and reflections. Health care staff were lacking in knowledge about ESBL and their own fears that led to the use of extreme hygiene measures, which increased the stigma for the patient.

Conclusion: To manage their life situation, it is important that persons diagnosed as carriers of ESBL-producing bacteria receive adequate information from the attending doctor.