The importance of listening to patients

The stories of TB survivors are particularly relevant to policymakers as they provide insights into where programmes fail to meet patient needs.

At a recent event to mark World Tuberculosis Day in New Delhi, two TB survivors shared their stories of how they fought and survived this terrible disease. In a closed room filled with experts, international funders, and doctors, their stories resounded with resilience and courage. What did they need to fight TB? Not just free diagnosis and treatment, but care with dignity, individual and family counselling, nutritional support, and reduced stigma. They wanted the world to know that despite the toxic drugs and other challenges, they could fight TB if they were supported and respected.

Over the last several years, TB has come to be recognised as one of the world’s severest health crises, with India as its epicentre. It kills close to a 1,000 Indians every day, causes extensive human suffering, and pushes families and communities into poverty.

Yet, rarely do we ask survivors and their families about their needs for fighting TB. After all, surviving an infectious disease such as this is both an individual and social experience. Unless we understand it, how can we provide the necessary support?

Important stories

Contrary to popular belief, TB survivors are the real experts in fighting the disease although their perspectives are rarely heard. Even when patients do speak, their stories are chopped to fit mechanically into news articles and policy papers — for analysis or to shock. Rarely do their inputs shape policy or programmes as they should.

The stories of the TB-affected are not just their own stories but narratives that tell us how patients interact with doctors, health systems, in families and communities. The descriptions of their lived experience in fighting TB are critical in order to meaningfully understand their lives both at an individual as well as a social level. They are of particular relevance to policymakers, as they provide insights into where programmes fail to meet patient needs. Through these stories, we understand experiences, memories and feelings. In the process, we understand how decision-making takes place in the mind of a patient.

While storytelling and patient narratives are not considered ‘reliable’ evidence, they are undisputedly invaluable insights into the mental and physical experience of fighting any disease. These stories demonstrate the many challenges that the TB-affected continue to face, irrespective of whether these patients seek care. These insights are critical if we wish to achieve the oft-used term ‘patient-centric’ care.

Even our finest strategies to fight TB guided by scientific evidence and medicine will fail until we understand the patient experience. Our effort to find transformative drugs and tools to fight this disease is meaningless until we understand the simpler demands of patients such as social and economic support, dignity, and acceptance. If we wish to defeat TB, we have to begin by addressing the social, economic and cultural circumstances in which those affected by TB fight this disease.

Fighting stigma

Perhaps the most important, yet neglected, challenge for patients is that of TB-related stigma. Irrespective of economic and social backgrounds, literacy levels or awareness, most TB-infected people choose to remain silent about the disease to extended family, friends, and their communities. Women in particular continue to remain quiet due to fear of social ostracisation, discrimination, and abandonment.

Another critical aspect is patient literacy about TB. Despite undergoing treatment for months, patients lack a basic understanding of what the disease means, and their families are unable to comprehend the significance of the problem. In many cases, families and communities mistreat patients.

As India gears up to fight the growing epidemic of drug-resistant TB, it must recognise the fact that TB patients and communities need awareness, empowerment, support, and reduction in stigma. These are decisive factors in determining the ability of a TB-infected individual to fight this disease. The role of family and community as an enabling force is critical.

Patient stories are a charter of demands from patients that we have ignored for a long time. It is important for all of us to listen and understand their needs and address them. Until we do so, we are unlikely to succeed in fighting the disease.

Chapal Mehra is an independent New Delhi-based writer.