17 May 2012, Secretariat of the Pacific Community (SPC), Noumea
The words ‘defaulter’ ‘suspect’ and ‘control’ have long been used by national tuberculosis (TB) programme staff and those involved in TB management. They continue to be used to this day, and are used in international policy documents about TB.
In the June issue of the International Journal of Tuberculosis and Lung Disease, a group of TB experts from around the world, including three experts from the Pacific region, describe the potentially detrimental effect of such language in their article entitled: ‘Language in tuberculosis services: can we change to patient-centred terminology and stop the paradigm of blaming the patients?’
The authors describe how the use of words such as ‘defaulter’ (a person who has started TB treatment that is interrupted for two consecutive months or more) can be judgmental and lay the blame for the disease and the responsibility for adverse outcomes on the patient. Many studies clearly show that there are diverse reasons why people diagnosed with TB cannot complete treatment, including ‘shortcomings of health systems as well as physical, financial, social and cultural obstacles’. The authors also describe the use of the words ‘suspect’ and ‘control’ and how these words can also be detrimental and judgmental towards patients.
The lead author of the article, Dr Rony Zachariah from Médecins Sans Frontières, says: ‘From the patient’s perspective, these terms are at best inappropriate, coercive and disempowering, and at worst they may be perceived as judgmental and criminalising’. He goes on to say: ‘For TB patients ... the last thing they need from the health system is to be referred to in a manner that is disempowering and detrimental to their acceptance in society’.
The group of experts who were co-authors of the article includes researchers, policy makers and health practitioners from Africa, Asia, Europe, Latin America and the Pacific region. The three Pacific TB researchers, Dr Karen Bissell from the International Union Against Tuberculosis and Lung Disease, Mr Sharan Ram from Fiji National University and Ms Kerri Viney from the Secretariat of the Pacific Community, strongly advocate for patient-centred TB care in the Pacific region that is non-judgmental and non-discriminatory.
The authors propose that ‘defaulter’ be replaced with ‘person lost to follow-up’; that ‘TB suspect’ be replaced by ‘person with presumptive TB’ or ‘person to be evaluated for TB’; and that the term ‘control’ be replaced with ‘prevention and care’ or simply deleted.
They appeal to the Stop TB Partnership: ‘to lead the discussion on this issue and to make concrete steps towards changing the current paradigm’.
The same issue of The International Journal of Tuberculosis and Lung Disease contains an editorial by the Stop TB Partnership’s Executive Secretary Dr Lucica Ditiu and the Vice-Chair of the Partnership’s Coordinating Board Blessina Kumar entitled ‘Tuberculosis care: why the words we use matter’. Dr Ditiu and Ms Kumar agree that ‘language has the power to transform the way people think and behave’ and respond by saying that the Stop TB Partnership ‘is fully supportive of the suggestions set forth in the paper’.
The World Health Organization also commented, saying that it is currently reviewing the definitions for TB cases and treatment outcomes, and the authors’ views will be incorporated into that process. Their final recommendations will be available by the end of 2012.
Click here to read the article:
Click here to read the editorial:
For more information, contact Ms Kerri Viney, Acting TB Adviser, SPC Tel.: +687 262 000 ext 31214; E-mail:
or visit the SPC website: www.spc.int.