Adherence in Adversity: Rethinking Belief as a Barrier

Public health literature often points to the role of spiritual or supernatural beliefs in shaping health-seeking behaviour, including delayed access to formal care or interruptions in adherence, especially in long-term conditions like TB. In my work on a project that examines digital adherence technologies for tuberculosis, one conversation shaped how I came to understand beliefs as more than just a hurdle to care seeking.

Ashok was undergoing treatment for relapsed TB. During one of our home visits, his mother Bimla said, “Babaji watches over him,” pointing to a portrait hung above her son’s bed, angled as if it could actually look down and keep watch over him. “There was a time when I had left it to Babaji to cure my son”, she told me. My first instinct was to read it as superstition, a familiar explanation for why treatment might be delayed or inconsistently followed.

I tried to gently steer the conversation back to science, explaining to her the importance of treatment completion. I spoke about timelines, the need for continuity, and the risks of stopping early. She listened, but as she spoke about her situation, the real story emerged.

She works as a domestic helper and is the primary earner for her household. She has three children to care for. Her husband, despite having a stable job, does not contribute reliably to the household. She described him as an alcoholic, often absent, and at times abusive. In practice, she manages the home, finances, and caregiving largely on her own.

In her household, the work of sustaining treatment rests primarily with her, with some support from her young daughters. She has to ensure that medicines are taken, track symptoms, manage follow-ups, and keep the regimen going over months, all while earning and caring for three children. With an uncooperative husband and her son showing depressive tendencies, there is no shared responsibility to absorb lapses or reinforce continuation. In this context, her faith and reliance on Babaji becomes an external anchor in a setting where internal support is limited.

Her son had been diagnosed with TB a year ago and had started treatment. After three months, when his symptoms improved, he stopped taking the medications. In TB, where treatment is prolonged and symptoms often improve before completion, there was no one else in the household to reinforce adherence. An intermittent cough persisted, but they did not treat it as something serious. At different points, she managed it in ways that were available to her. She brought medicines from a local provider. At other times, she prepared haldi milk, placed it before Babaji’s photograph, and prayed for relief. According to her, it worked, and the symptoms resolved for a while.

However, when the cough came back, she took him to the hospital. The TB relapse was confirmed, and treatment was restarted. She seemed keen to complete the regimen and even asked us to counsel her son. Clearly, she was not opposed to medical care. She had sought treatment more than once and was willing to continue it. What was inconsistent was not her intent, but the conditions required to sustain that intent over time.

Her beliefs did shape how she understood her son’s illness and recovery, while also providing a sense of support in a situation where she had little reliable help. For instance, when she said that Babaji had ‘made’ her husband take their son for testing, she was locating agency in a figure she trusted in a context where decision-making within the household was otherwise uncertain.

To add to her woes, there were many other constraints, such as limited financial resources, lack of shared caregiving, and a home environment that could turn hostile. These conditions meant that continuity of care was difficult to sustain, especially when immediate pressures took precedence.

What I first read as belief turned out to be something else. Care itself was difficult to sustain within her circumstances. Babaji did not replace treatment. He functioned as an anchor in a life where she carried responsibility largely alone. Religious belief did shape how she understood illness and, at times, it led to delays in seeking care. But it did not primarily drive non-adherence. What interrupted treatment was the absence of support systems needed to sustain it. In this case, what appeared as superstition was also a way of managing that absence.

More importantly, this conversation deepened my understanding of adherence. It is more than a patient’s behaviour, and is influenced by the social, cultural, and economic context around them. Perhaps the question, then, is not only whether patients adhere, but whether the conditions around them make adherence possible.

*The views expressed in this article are solely the personal opinions and reflections of the author(s) and do not necessarily reflect the objectives of the study they are part of. All names of individuals have been changed to protect confidentiality.

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