Mental health issues and tuberculosis (TB) are two intertwined, though often invisible, co-epidemics that people in India aren’t talking about enough. Though often mentioned in passing, public health systems are yet to acknowledge or actively address them as co-morbidities that affect individuals, their ability to fight TB, and live a productive life thereafter.
Mental health problems are estimated to affect a substantial proportion of patients with TB. Most TB survivors say that at some point they have faced mental health issues such as depression, anxiety disorder, and low self-esteem. Sadly, TB and its management is so highly medicalised that issues such as mental health and TB associated stigma, which can lead to mental health problems, do not even figure on the radar of healthcare providers.
People with mental health problems in India are at an increased risk of exposure to TB infection due to homelessness, smoking, poor nutrition, and co-morbidities such as diabetes and HIV. TB can also be the cause of mental illness. TB treatment is long and several anti-TB medicines, such as cycloserine, can cause extreme mental health problems such as depression, anxiety, or psychosis. Moreover, TB also remains highly stigmatised. Evidence shows that these factors can lead to patients stopping treatment, increased alienation, and also extreme forms of self-harm, including suicide.
Doctors working in heavy burden and low resource settings often disregard and overlook mental health issues. This has a direct bearing on patient wellbeing, but also disease transmission and the overall epidemic. Why? Depressed patients are three times more likely to stop or give up on treatment due to side effects. They are also less likely to delay seeking treatment. This leads to possible drug resistance, increased transmission, and poor treatment outcomes.
In India, existing psychosocial interventions are either geographically and demographically limited or conceptually limited. The Saksham Pravah project is an initiative that provides home-based psychosocial counselling to both patients and caregivers. It is geographically limited to a few states and limited to MDR TB patients.
Another successful initiative is the treatment support group model in Kerala that provides community based support groups. Experiences from our own work through Survivors Against TB reveals the enormous number of queries and requests for support for mental health issues that we get. These experiences highlight how crucial it is that patients with TB and their families receive psychosocial support.
So how can we address this challenge? For starters, we need to look beyond clinical practice and focus on the mental health aspects of fighting and surviving TB, not just focused on treatment outcomes.
Examining patient literacy programmes is instructive, as we have learnt from experiences of treating patients with HIV. These programmes help increase adherence to treatment and help healthcare professionals monitor treatment outcomes. Programmes also need to focus on the impact that this treatment has on the patient’s quality of life and mental health.
Any psychosocial intervention needs to factor in the patient’s wellbeing in a holistic manner. Such an intervention should go beyond adherence counselling, and address the psychosocial needs of the patient by adopting a three-pronged approach.
The first would be to provide psychological first aid. Conventionally, psychological first aid is provided by community-based groups in the aftermath of traumatic events. However, as is evidenced from the WHO’s guide on psychological first aid during the Ebola outbreak, this can also be effective in the context of life threatening communicable diseases. Psychological first aid does not require any formal training and can be provided by the community as is done by treatment support groups in Kerala.
The second would be to check for mental health problems during treatment. In India one could work around the resource constraints by scaling up interventions such as the Health Activity Program which, according to a study published in The Lancet has been successfully implemented by lay health workers in primary healthcare low-resource settings to screen for and treat depression in Goa.
The third component would be psychological rehabilitation after treatment to help the patient deal with residual depression, as well as self stigma. Yet again community based support groups have a vital role to play in the rehabilitation and reintegration of the patient into the community
These initiatives ought to be scalable and also need to be geographically and culturally relevant. Addressing a complex co-epidemic such as mental health and TB won’t be easy until we choose to innovate and look to communities for guidance. Until then, we may diagnose and put people on treatment, but we won’t be able to ensure either completion of treatment or an improved patient experience, let alone an acceptable quality of life.
Ashana Ashesh is a lawyer, Member Survivors Against TB.
Chapal Mehra is a writer and public health specialist, Founder Survivors Against TB.
Competing interests: None declared.