Self-Stigma As a Barrier to Tuberculosis Elimination

Líbhan Collins, Key Correspondent for the Irish Forum for Global Health

During November 2018, The Irish Forum for Global Health hosted a Global Health Exchange Conference in the RCSI, Dublin, offering a space for information flow and discussion around the Sustainable Development Goals (SDGs). In particular, much of the exchange centred on the goal of ‘Health for All.’

On the first day of the conference, Nadine Ferris-France spoke passionately about a toolkit developed by The Work for Change, in collaboration with Netherlands-based TB organisation KNCV,  that aims to reduce self-stigma among people living with or recovered from TB. The toolkit’s core approach is to allow participants to address feelings of shame and self-judgement, and there have been promising results so far for people affected by HIV and victims of gender-based violence. Today’s presentation focused on its potential in the context of TB.

TB infection is airborne and quickly spreads in densely populated areas. According to recent WHO statistics, around 1.7 billion individuals are carriers of latent TB, with 10% of the global population developing an active infection during their lifetime. Comorbidities, such as HIV, often exacerbate progression of the infection, and current prevention methods and treatments for TB are insufficient. Drug resistance is a growing problem and currently prevention is only offered by the BCG vaccine, which lacks efficacy on a global scale. It also doesn’t confer lifelong immunity.

TB is curable though treatment must be adhered to closely, usually monitored using DOTS (Directly Observed Therapy, Short Course). Problems with adherence are common, often the result of stigma and difficulty attending clinics for observation and monitoring of treatment efficacy. Failure to attend and poor treatment adherence or effectiveness – for multiple reasons – can lead to multidrug resistant and extensively drug resistant disease. With the risk of total drug resistance looming, there is a need for robust interventions to address the challenges TB presents, including stigma, and in particular self-stigma.

Illustrating the headspace of people with TB who self-stigmatise, Nadine shared that people can think, ‘I am dirty’. Self-stigma is a result of one’s own beliefs, where people are self critical with a negative self-perception often based on what they expect other people to be thinking. They feel a shame which permeates thoughts and actions and a belief that an infection makes us less than we are. The consequences of self stigma are significant. Negative thought patterns and beliefs lead to feelings of not belonging or not deserving services. People fear being seen at the clinic for treatment and may not enter the health system as a result. This in turn means there is a decreased quality of life, low self-esteem, low self-efficacy, and increased risk of fatality. Self-stigma and shame are also likely to lead to anxiety and increased depression.

The Work for Change runs several initiatives underpinned by the need for an inclusive environment promoting an awareness of how common it is to experience shame, and how to reduce it. New vaccine development is the most sustainable way forward but, to prevent global TB resurgence, stigma, and particularly self-stigma, must be addressed. Interventions such as the toolkit and courses run by The Work of Change have real potential to reduce stigma and improve the quality of life for people affected by TB.

6th November 2018