Table 1

Recommendations to modify practices that may compound stigmatisation of patients with tuberculosis (TB)

TB policy or practiceStrategies to mitigate stigma
TB screening and testing
  • Inform and counsel patients about TB and/or differential diagnoses pre and post screening and testing

  • Protect patient confidentiality (eg, share test results in private)

  • Advise patients of their right to access treatment

TB notification
  • Protect confidentiality of TB test results and patient anonymity (eg, use unique patient IDs, or draw on local HIV reporting methods)

  • Institute safeguards to ensure that TB test status does not affect a person’s employment status, immigration status or qualification for other government benefits or services (eg, implement firewall policies between public health services and other state functions such as immigration and border control)

Contact tracing
  • Integrate TB-related health literacy and counselling into contact investigations (eg, family counselling, support patients in ways to disclose their illness)

  • Protect patient confidentiality (eg, avoid naming or labelling the index patient wherever possible)

  • Provide preventive therapy where warranted (ie, ensure that a TB diagnosis is followed by the option to initiate therapy under free and informed consent)

Infection control measures
  • Inform and counsel patients about TB transmission risks and measures to reduce these risks

  • Normalise face mask use and emphasise its capacity to protect patients in addition to contacts

  • Test sputum routinely to identify conversion/non-infectivity, to enable early discharge from isolation, and use rapid tests such as Xpert MTB/RIF to facilitate this

  • Identify safe peer and social support networks to mitigate social isolation

TB treatment initiation
  • Inform and counsel patients about TB treatment, including duration, potential side effects, expected benefits, availability of free treatment and the importance of adherence

  • Promote equitable access to newer, safer, shorter treatment regimens

  • Engage patients in decisions regarding auxiliary therapy, where possible (eg, management of adverse effects, mental health, nutritional supplementation)

  • Refer patients to services and resources to facilitate adequate support for adherence, including referral to champion patients and TB survivors

  • Advise patients of their right to access treatment as opposed to just their mandate to initiate and adhere to therapy

  • Establish systems that respect patient decisions to access TB services from their preferred provider and maintain continuity of care (eg, public–private health partnerships, integration of TB and HIV services)

TB treatment monitoring
  • Build TB treatment literacy to support self-administration

  • Implement adherence promotion strategies that are feasible and acceptable to patients (eg, phone reminders, smart pill boxes, peer networks)

  • Promote mechanisms to protect patients’ employment and enable access to social security during TB treatment

  • Facilitate safe reintegration of patients into social and work settings to foster social well-being and financial independence (eg, by sensitising employers and families to TB)

  • Assess palliative care needs and resources for patients who may be incurable, and their caregivers

TB research activities
  • Involve research participants and other community members and stakeholders in the research development and dissemination process (eg, following the recommendations of the Good Participatory Practices for TB Drug Trials)

  • Create a community advisory group to inform the research process and ensure that research practices and procedures do not inadvertently result in stigmatisation of patients with TB

TB consciousness and awareness raising activities
  • Raise global consciousness by connecting TB-affected communities through media and other forms of public representation (eg, via stories and images of healthy TB survivors rather than those that reinforce negative stereotypes against groups most affected by TB)

  • Disrupt the current narrative underlying practices that may be stigmatising (eg, reframe TB screening and contact tracing practices as empowering so that an index patient gains control of his/her illness and uses this knowledge to protect others)

  • Use TB science to affirm rather than neglect the rights of patients with TB (eg, emphasise when a patient becomes non-infectious just as vigorously as his/her infectious state was emphasised)

  • Sensitise employers to support employees with TB and promote employment of TB survivors

  • Build spaces for consciousness raising by bringing together people affected by TB to share their experiences, identify common challenges, and organise to change practices that reify stigma or impede patient-centred care (eg, through peer networks and advocacy forums)

  • Routinely invite TB survivors to speak at (even open) TB conferences and meetings, to acknowledge their suffering and to give them a voice in the mainstream TB community