Dharamsingh (name changed) from Davanpur, near Achanakmar Tiger Reserve, about 170 km north of Raipur, in rural Chhattisgarh, narrates his experience of starting on anti-hypertensive medications. He talks about how the healthcare worker in his village measured his blood pressure on multiple occasions, and which was always high. While she always advised him to consult a doctor, he never experienced any symptoms and ignored her suggestion.
One unfortunate morning, while working in his cycle shop, Dharamsingh felt weak in one arm and a leg, and his face started to paralyse. He was experiencing a stroke.
The high blood pressure had caused arteries in his brain to burst, spilling blood into the organ. After this incident, he started paying attention to his illness and started proper treatment. Only after regularly taking medicines did Dharamsingh realise that his stroke had been the result of his untreated hypertension. He’s been taking medicines every single day since.
Now, it’s a known fact that many of us struggle to adhere to these regimens.
Understanding the difficulties in adherence may help us empathise with those diagnosed with chronic conditions, who will continue to live with the medicine-taking ritual for their whole lives – like Dharamsingh.
Chronic diseases are illnesses that affect a person for more than three months at once; they often tend to be lifelong. While infectious diseases like tuberculosis, leprosy and HIV/AIDS require prolonged treatment regimes, most chronic diseases are non-communicable diseases (NCDs), such as hypertension, diabetes, heart diseases, epilepsy and severe mental illnesses.
The incidence of NCDs (25% in rural India for hypertension, for example) has been increasing rising in the country and around the world. Treating them poorly can cause a significant loss in years lives as well as further complications. Thus, once diagnosed, NCDs restrict the rest of a person’s life. All of this increases the burden on the public health system.
Dharamsingh’s story doesn’t stop at taking treatment. He is now a prominent member of a hypertension support group in his village where he attends meetings every month and collects his medicines from a nurse. He says the meetings have helped him take control of his health.
Similar groups have come together to form a federation of hypertension support groups.
In medical sociology, ‘sick role’ theory talks about how an ill individual must perform a ‘sick role’ with few benefits and rights, and with some obligations, too. The role gives a patient the right to be freed of duties and other work but fosters an obligation to attempt to get better by seeking help from an expert (e.g. a doctor). This model of looking at illness is helpful but also inherently flawed; it has been criticised by several people who do not want to be labeled ‘patients’. They also reject the idea of a doctor being ‘in charge’ of their illness since this paternalistic model robs patients of their agency and gives it to a doctor.
When the federation of hypertension support groups met in Bilaspur, it both defied and rejected ‘sick role’ theory. The federation’s members have taken it upon themselves to advocate against salt and tobacco consumption – for their own benefit but also for that of the community at large. The stance of its members has means that the recipients of care are no longer just that – that they are also ambassadors of social change. They do not see themselves as ‘patients’ waiting to be instructed but as ‘people’ who partner with each – and the doctor – to improve the quality of their and others’ lives.
Community meetings to educate and advocate
At one meeting, Sonuram (name changed) from Piparkhuti, Bilaspur district, says that going to the group has helped him know more about his illness and the impact of his lifestyle on it. In spite of taking his medicines regularly, he had been unable to control his blood pressure – until he quit a local tobacco product called ‘gudakhu’.
Some women from Katami, a village in the core forest zone of Achanakmar Wildlife Sanctuary, were opposed to the consumption of gudakhu but were reluctant to voice that for fear of flak from the broader community.
Mankibai (name changed) said “We have restricted the sale of alcohol in our village with the support of other women but we won’t be able to stop gudakhu. If we do, we will be blamed as it will be [one too many] restrictions on the villagers.”
There were similar sentiments about restricting the sale of packaged foods in their respective villages.
Having heard this, Dashrathbai, a strong member of the community, urged everyone to first speak to their respective families to bring about this change. She herself suffers from hypertension, and spoke to the gathering about how they should start with little steps, with their families as agents of change, and then speak to the village as a whole – just like she had.
The gathering at which Dharamsingh, Mankibai and Dashrathbai spoke had been the first hypertension federation meeting, held in January this year, organised by Jan Swasthya Sahyog (JSS). JSS runs a rural community health programme and a hospital in Bilaspur district; it provides healthcare in villages situated in the tiger reserve with the help of trained village-level health workers. These workers helped put together disease-based peer groups near their villages when they realised that many people didn’t seek care despite chronic illnesses. Without them knowing what was happening, lifestyle changes were out of the question.
At this meeting individuals, spoke about how to effect lifestyle changes by reducing salt intake and quitting tobacco. For example, Dharamsingh shared how his support group had been able to motivate members to seek care such that they’ve achieved nearly 95% compliance with medicines, as well as advocate for reducing the sale of packaged salty snacks in his village.
Such interventions began with the question of how people with chronic diseases could be supported unto improving their compliance and preventing further complications. JSS now facilitates about 50 such groups for illnesses like epilepsy, sickle-cell disease, hypertension, diabetes mental illness and alcohol addiction. Members’ compliance rates have reached nearly 90% while the global average has been 50% at best.
As a result, secondary and tertiary complications of the illness become easier to stave off. For enrolled individuals, better compliance has translated to better health outcomes, which means people will have a lower risk of suffering strokes or heart attacks as complications of their untreated hypertension.
Finally, the people also develop a stronger sense of fraternity. So with the broad aim of encouraging people to own their healthcare needs, these groups have been able to communitise healthcare.
Shruti Samant is a program coordinator and Anup Agarwal is a HEAL Initiative Fellow, both at Jan Swasthya Sahyog, Ganiyari, Bilaspur. Samant may be reached at email@example.com.