"Will I Leave Alive?": The perceptions and feelings of multi-drug-resistant tuberculosis patients in their long-term hospital life

Objective: In Japan 100 new cases of multi-drug-resistant tuberculosis (MDRTB) are diagnosed each year. During treatment patients must be hospitalized under isolation conditions. To describe their experience and feelings was the purpose of this study.

Method: Ten patients in two hospitals responded to semi-structured interviews in 2006-2007. Interviews were audio-taped, transcribed verbatim and analyzed by content analysis techniques.

Results: Participants were seven men and three women ranging in age from 34 to 76 years. Two were experiencing the initial onset of disease; the others were re-admissions. Their current admissions extended from 21 to 3036 days.

All patients knew they had a disease that was “difficult to cure;” some believed they would "be cured,” but others were afraid that they “cannot be cured;” "whether they would survive to return home or not" was a concern. Most felt much stress because they “could not see future," due to their disease and also the long-term hospitalization and isolation…"almost nothing about hospitalization is enjoyable." Visits from family and friends, letters and emails, and conversations with nurses linked patients to others and the outside world.

Conclusion: MDRTB patients sense the possibility of death. As patients respond to laboratory tests and treatments nurses help them "envision their possible futures." Nurses are key connectors to outside worlds. Recognition of and support for such communications functions might help nurses sustain their burden of caring and thus patients' endurance of the difficult conditions of their enforced hospitalization.