The Stop TB Partnership recently publishedEvery Word Counts, Suggested Language and Usage for Tuberculosis Communications, the language guide for those involved, either directly or indirectly, in addressing the tuberculosis epidemic. The document called for people with TB infection to be put at the centre of the global TB response, starting with “acknowledging that the language commonly used to speak about TB must evolve.”
Our decades of working with people with HIV and AIDS taught us, as the guide suggests, that “language influences stigma, beliefs and behaviors, and may determine if a person feels comfortable with getting tested or treated.”
Yet, I wonder whether part of reason for producing the Every Word Counts document is that TB caregivers and service providers, doctors, nurses, lab technicians and DOT providers risk treating TB patients like problems to be solved, rather than people to be helped and healed.
This was the premise of the hugely successful U.S. TV showHouse in which an unconventional, misanthropic medical genius saved patients from obscure illnesses while ignoring their humanity. That kind of brusque, dispassionate induction certainly made for compelling television, but could it also be a partial reason behind the rise of drug-resistant infectious diseases, including TB?
From blame to being involved
A 2012 article in the Journal of Tuberculosis and Lung Disease noted that the powerfully negative connotation of words such as “defaulter” and “suspect” placed blame for the disease and responsibility for adverse treatment outcomes on just one side: people with TB. Is it any wonder that patients fail to complete their treatment or don’t return for checkups if they are made to feel guilty?
Tuberculosis remains one of the world’s most deadly diseases, killing three people every minute. Each year 9 million people develop TB and 1.5 million die from the disease. About three in every 100 new cases of TB could not be treated with first-choice antibiotics. While it’s completely rightto call for $56 billion to bring an end to TB, we should not underestimate the importance of genuinely involving the patients themselves and their communities as active participants in diagnosis and treatment.
World Vision has seen the significant impact of so-called sponsor schemes such as Grameen in Somalia, where community volunteers commit to help TB patients in successfully completing their treatment courses. We have also seen how powerful counseling and appropriate communication skills can be at every stage of identifying and treating TB infection.
We have learned that effective TB programming should include TB-counseling training, and that counseling must happen at every stage of diagnosis and treatment — from cough to cure. Social workers, psychologists, doctors, technicians and community health workers can all be equipped to establish and ensure a patient-centric approach in disease management that builds patient-provider trust and co-ownership of the course of treatment. Basic training in such ‘soft skills’ as interpersonal communication, negotiation, conflict resolution, time management and team building can equip service providers to better explore and shape a client’s attitude to their diagnosis and treatment.
Such training will also make providers think twice about automatically speaking to patients and their loved ones from a place of authority and technical expertise, using the kind of lexicon Every Word Counts seeks to avoid.
Of course using insensitive words when speaking to those affected by TB is not the only reason for the rise of MDR TB. However, a patient-centred approach employing the right vocabulary — plus compassionate counseling techniques that demonstrate sincere concern for TB-affected individuals, their close social circles and family members — will ensure most people with TB seek and complete treatment. This will give the bacterial infection much less opportunity to adapt and thrive.
Dr. Gagik Karapetyan is World Vision’s senior technical adviser — infectious diseases. He has more than 20 years of working experience in the health field and over 10 years of project management experience, including management and coordination of the programs supported by the Global Fund to Fight AIDS, Tuberculosis and Malaria.
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