People who suffer from antibiotic-resistant bacteria must be better addressed in health care, experts urge

Extended-Spectrum Beta-Lactamase (ESBL) is an enzyme which conveys resistance to most beta-lactam antibiotics. Infections are often difficult to treat due to general multiresistance and hospital care may be necessary even for non-serious infections.

"To suffer from an infectious disease can be stressful for the individual, both physically and mentally," says Susanne Wiklund, whose study deepens the understanding of what it means for individuals to suffer from ESBL-producing intestinal bacteria.

The results show that patients with these bacteria are exposed to an information culture in health care which in some cases is poor, despite legislation. "This results in fear and confusion around the diagnosis," says Susanne Wiklund.

In order to manage their life situation, it is important that those who have been infected of an ESBL-producing bacteria receive good information from the attending doctor, she explains further. All those interviewed felt they had received either insufficient no information about the diagnosis from the physician. The route of information was either by phone or a letter in the mail. Both the approach and content of the information affected the participants emotionally.

The interviewees had many thoughts and reflections after the interviews, including the question of how they had been infected; through medical care or something they had done themselves? Ignorance within health care was perceived as stigmatizing.

The discrepancy in how patients were treated was significant, from extreme hygiene measures consisting of protective gear to lacking hygiene. In addition, the study revealed perceived attitude problems among the personnel, carelessness, lack of understanding as well as no willingness or time to answer questions.

Patients instead tried to obtain information themselves; the Internet was used by everyone. The fear of infecting others resulted in the women introducing their own measures, e.g. instructing others about hand hygiene, using their own disinfectants during health care visits, avoiding public transportation, socializing with others and also self-informing others about their infection.

The male participants in the study continued to live life as they had before; no one wanted to cause worry for their family members/significant others. Some of the participants had not informed their children about the diagnosis, and the uncertainty surrounding what to say was great as they felt that they have not been properly informed.

The study approach was qualitative and materials from seven interviews were analyzed with Grounded theory.