Multi-Level Barriers and Facilitators to Breast Cancer Adherence in India: CFIR- ERIC Insights from a Tertiary Centre

In hospitals across India and many other developing nations, a woman diagnosed with breast cancer faces a battle that extends far beyond the disease itself. While doctors possess the medical knowledge and the medicines to treat the cancer, getting a patient to stick with the full course of treatment is often a struggle against the realities of daily life. This challenge is not just about a patient forgetting a pill or missing an appointment; it is about the crushing weight of travel costs, the exhaustion of waiting in line for days, and the fear of running out of money. Researchers have long known that simply providing free or cheap medicine is not enough if the system surrounding it is broken. To understand exactly where the system fails, scientists are increasingly using structured ways to look at healthcare, breaking down the problem into specific layers: the money and resources outside the hospital, the physical layout and rules inside the hospital, and the personal feelings and family dynamics of the people involved. By examining these layers together, they hope to find practical ways to fix the bottlenecks that cause patients to give up on their care.

A team of researchers at a major public hospital in Haryana, India, recently set out to map these obstacles in detail. They focused on a specific group of breast cancer patients and the people who support them, including family members (both male and female caregivers) and the doctors and nurses who treat them. The study took place at the National Cancer Institute, a large public facility where many patients come from distant villages with limited resources. The researchers did not just look at medical records; they sat down and listened. They conducted in-depth interviews with twenty-five people and held three group discussions, allowing patients, caregivers, and staff to tell their stories in their own words. The goal was to understand why, despite the availability of treatment, nearly thirty percent of patients in their tracking data stopped coming for their care. The team found that the reasons were not random or personal failures, but rather a predictable chain of systemic and emotional hurdles that pushed families to the breaking point.

The most immediate barrier the researchers found was money, but not just the cost of the medicine itself. Even when the treatment is subsidized, the cost of getting to the hospital is often prohibitive. Patients and their families described borrowing money just to pay for bus tickets and food while staying near the hospital. One caregiver explained that while the treatment was supposed to be affordable, the travel and living expenses left them with nothing. This financial exhaustion, which researchers call "financial toxicity," was a primary driver for families abandoning treatment. It was not a lack of will to fight the disease, but a lack of resources to survive the journey to the cure. This finding suggests that for many families, the decision to stop treatment is a desperate economic calculation rather than a medical one.

Inside the hospital walls, the obstacles were equally daunting. The study revealed severe delays caused by a lack of infrastructure and resources. On average, a patient had to wait three weeks just to get a biopsy, a test needed to confirm the diagnosis, and up to eight weeks to get surgery. These wait times were not just inconvenient; they were damaging. Patients described spending entire days waiting only to be told that a machine was broken or a doctor was in an emergency. One patient noted that this constant waiting broke her spirit more than the disease itself. The physical environment of the hospital, with its long queues and broken equipment, created a sense of hopelessness that made it difficult for patients to stay engaged with their care. The researchers observed that these delays were not isolated incidents but a structural failure of the system to handle the volume of patients.

Beyond the money and the waiting, the human element played a critical role. The study highlighted the immense strain placed on caregivers, who are often family members forced to take time off work to care for the patient. This physical and financial burden on the family unit often led to a collective crisis. In the Indian context, where a person's identity and decisions are deeply tied to their family, a cancer diagnosis disrupts the entire household, not just the individual. The researchers found that while some families relied on traditional beliefs or alternative medicines due to a lack of understanding about the disease, the strongest force keeping patients going was the emotional support of their relatives. When a family stood together, it provided a resilience that helped patients endure the hardship. However, this same family unit was also the one most likely to collapse under the weight of the costs and the time lost.

To address these deep-rooted issues, the researchers proposed specific, practical changes based on what they heard from the people involved. They suggested that hospitals need to do more than just treat the disease; they must help patients navigate the system. This includes assigning dedicated staff to help families find financial aid and manage the complex logistics of their care. They also recommended reorganizing the hospital layout to reduce waiting times, perhaps by grouping diagnostic tests together so patients do not have to wait in multiple lines. Furthermore, the study emphasized the need for a more compassionate approach, where doctors and staff are trained to listen to the stories of their patients and understand the emotional and family context of their illness. This approach, known as narrative medicine, treats the patient as a whole person with a life and a family, rather than just a case to be processed.

The study concludes that fixing breast cancer care in India requires a shift in how we think about treatment. It is not enough to provide the drugs; the entire journey must be made accessible. The researchers argue that unless hospitals address the travel costs, the long waits, and the emotional toll on families, many women will continue to fall through the cracks. By implementing these targeted changes, such as financial navigators and better hospital workflows, the healthcare system can reduce the burden on families and ensure that life-saving treatments actually reach the people who need them. The findings serve as a clear roadmap for other hospitals in similar settings, showing that the path to better health outcomes lies in fixing the human and logistical details of care, not just the medical ones.