The words ‘defaulter’, ‘suspect’ and ‘control’ have been part of the language of tuberculosis (TB) services for many decades, and they continue to be used in international guidelines and published literature.
The detrimental effect of such negative language is detailed by TB experts from around the world in an article in the June issue of the International Journal of Tuberculosis and Lung Disease (IJTLD), “Language in tuberculosis services: can we change to patient-centred terminology and stop the paradigm of blaming the patients?”
The authors describe how judgmental terms, such as referring to a person who might have tuberculosis as a ‘TB suspect’ can powerfully influence attitudes and behaviour at every level – from inhibiting patients to seek treatment to shaping the way policy-makers view the challenge of addressing the disease. They call for the Stop TB Partnership to lead discussions on this issue and make a change.
“From a patient perspective, these terms are at best inappropriate, coercive and disempowering”, says lead author Dr Rony Zachariah of Médecins Sans Frontières. “At worst, they could be perceived as judgmental and criminalising”.
The article also observes that the powerfully negative connotation of words such as ‘defaulter’ and ‘suspect’ tend to place blame for the disease and/or responsibility for adverse treatment outcomes on one side — that of the patients.
Bringing together the opinions of authors and institutions from Africa, Asia, Latin America, Europe and the Pacific, the article proposes that the current terms be replaced with non-judgmental and patient-centred terms.
For example, the term ‘TB suspect’ could be replaced by ‘person with presumptive TB’ or ‘person to be evaluated for TB’; and a ‘defaulter’ could be referred to instead as a ‘person lost to follow-up’. The term ‘control’, which is not used in reference to other infectious disease could be replaced with the more appropriately descriptive ‘prevention and care’ or simply deleted.
The Stop TB Partnership’s Executive Secretary Dr Lucica Ditiu and the Vice Chair of the Partnership’s Coordinating Board Blessina Kumar today published an editorial”, Tuberculosis care: why the words matter”, in the same issue of the IJTLD, in which they commit to leading discussion on this issue and taking concrete steps towards changing the current paradigm of detrimental language in TB services. ”We strongly agree that language is more than words: it has the power to transform the way people think and behave,” they write.
The World Health Organization (WHO)also responded positively to this call to action as needed to build on the Patients’ Charter for Tuberculosis Care, published in 2006 and the goals outlined in the Global Plan to Stop TB 2011–2015. WHO will work on recommended definitions of TB cases and treatment outcomes, and the authors’ input will be considered in that process. Their final recommendations are expected by the end of 2012.
Click here to read the article
Click here to read the editorial
Stop TB Partnership