3.1.1 Informational and educational support

This support includes all information necessary to help patients and their caregivers understand TB, including the biological and social determinants of the disease, and agree on the steps for following the treatment plan and participating in local activities to engage communities in the response to TB. As an example, the Guide on the standardized package of community-based support services to improve TB outcomes describes many of the possible services for adherence support in detail (19). Provision of information and education should begin as soon as diagnosis is made and should continue throughout the course of treatment. Patient information and education take place over several visits with different health-care providers, including physicians, nurses and community health workers. Materials should be appropriate to the literacy levels of the patient, available in local languages and should be gender-, age- and culturally-sensitive. Information and educational pamphlets with reminders of the main points, in the local language, are helpful. For patients with literacy limitations, efforts should be made to use e-health tools based on audio or visual support.

Patients should also be provided with material to help them understand their rights in their local language (9, 10). The Patients’ Charter for Tuberculosis Care also describes the responsibilities of patients and will help the provider to educate the patient about the disease, the treatment and the overall response of the government and civil society to the TB epidemic.

The NTP and all health-care providers should use methods of “communicating with” (and not “talking at”) patients and their caregivers in a way that builds a positive partnership towards successful improved quality of life and treatment completion. For patients with literacy limitations, e-health tools based on audio or visual support should be used.

Although implementing patient-centred high-quality TB care as outlined in the International standards for tuberculosis care (1) will often require additional time to be spent by health-care workers, a lot can be achieved with simple changes in the attitudes and language used by health-care providers and by communicating key information about the disease.

The ethical and person-centred approach of the End TB Strategy is to be reflected as well in the language used by all TB stakeholders, including health care providers. Language is a well-known method of exerting power and control. Words such as “defaulter”, “suspect” and “control” contribute to disempowering TB patients despite the good intentions of the health-care providers. It is still not uncommon to find expressions such as “patient failed treatment”, which puts the blame only on the patient as if he or she were the only person responsible for failure of treatment. WHO has recommended replacing such language with words that are more respectful of patients and reflect better the values of the patient-centred approach to care that is now widely accepted in the TB community. Some examples include replacing “defaulter” with “person lost to follow-up”, “TB suspect” with “person with suspected TB” or “person to be evaluated for TB”; and “control” with ‘prevention and care’. This handbook and future TB documents of WHO are taking note of this suggestion to prevent derogatory and judgemental tones in the language used with patients and within TB prevention, diagnosis, treatment and care (20). For further details, see Section 4.2 on Effective communication skills and Section 4.3 on Counselling to provide information.

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