Hardoa, India (March 2024) — Every month for the past five months, rain or shine, at least one staffer from the neighboring health and wellness center has visited Achhe Lal Mallah at his home in the Madhya Pradesh village of Hardoa to check on his well-being.
About a year ago, Achhe Lal began coughing and felt a persistent rattle in his chest. He initially took over-the-counter medication from a village pharmacy, but it did not help. When he started coughing blood, he knew it was serious and alerted his family.
His family took this modest farmer and septuagenarian to the district’s community health center. An x-ray and sputum collection for a rapid diagnostic test for drug sensitive tuberculosis (TB) revealed that he had TB. Reassuring the family about TB’s high cure rate with diagnosis and proper treatment, the health care provider prescribed a six-month regimen of medication and care for Achhe Lal, with regular follow-up, and referred him to the neighborhood Ayushman Bharat health and wellness center (now called Ayushman Arogya Mandir) at Gadaghat under the care of Nurse Bharti Kewat, a community health officer. Achhe Lal’s family members also were tested as per protocol. With the four-to-six-month course of anti-TB drugs currently recommended by the World Health Organization, people can be cured of TB.
But Achhe Lal’s family are key to his recovery. Jhpiego-trained Nurse Bharti introduced Achhe Lal’s wife, three daughters, three sons and grandchildren to the family caregiver model. Developed by the U.S. Agency for International Development’s flagship health systems strengthening project NISHTHA: Transforming Comprehensive Health Care in India, led by Jhpiego in partnership with Noora Health, the family caregiver model was initially tested in two high-burden districts of Madhya Pradesh (Guna and Khandwa). Its success led to its national scale-up in March 2023, announced by the Prime Minister of India, with NISHTHA implementing the approach in 12 states of India, including Madhya Pradesh .
Achhe Lal’s youngest daughter, Prabhabai Mallah, 24, volunteered to be her father’s caregiver. “I felt it was best to train me as my brothers have to tend to the farm and spend a large part of the day in the field,” said Prabhabai, adding, “I was taught how to give my father the medication on time and make a note of that in the Pragati (progress) register given to me. I also learned the importance of proper nutrition—to feed him green vegetables, eggs, fish, lentils, millet, etc. I learned certain do’s and don’ts as well as the need to monitor his weight every month.”
Part of Achhe Lal’s family, who all live with him. Prabhabai is on the far right.
Along with training Prabhabai, Nurse Bharti enrolled Achhe Lal in the web-enabled patient management system for TB control under the National Tuberculosis Elimination Program, called NI-KSHAY, and updates his progress regularly on the portal.
Family caregiver model
Problem: In 2022, TB was the world’s second leading cause of death from a single infectious agent, after coronavirus disease, and caused almost twice as many deaths as HIV/AIDS, according to the World Health Organization TB Report 2023. India accounted for the highest number of TB cases in the world that year, with 2.8 million TB cases, representing 27% of the global burden. A significant challenge facing TB control in India is delayed diagnosis and inadequate treatment. Patients seeking care in the public sector have a better chance of treatment, but still one-third are lost between care-seeking and successful cure.
Solution: A family caregiver can be a strong bridge between the health system and the patient. If empowered with information and training, family caregivers can help improve health outcomes for TB patients. The family caregiver model aims to improve treatment adherence and treatment completion among patients with TB and drug-resistant TB. Through this model, community health officers train and equip family members to provide proper care to TB patients, identify early signs of adverse drug reactions, contact the health care worker promptly when needed, and provide proper nutrition.
Outcome: By the end of February 2024, 126,650 people had been enrolled as family caregivers of people living with TB in 12 states of India, which accounts for 64% of the total enrolled family caregivers with NISHTHA support.
Nurse Bharti finds the family caregiver model to be a step in the right direction. “I love this initiative because an ASHA worker cannot monitor a TB patient that closely—their daily diet, upkeep, and well-being. To fill this gap, there can be no one better than a family member,” said Bharti, referring to accredited social health activists (ASHAs) or community health workers employed by the government of India. “They are much closer to the patient, both physically and emotionally. This is also helping us track the patients’ progress better in the NI-KSHAY portal as the caregivers are usually younger and give us regular telephonic updates. Take Achhe Lal, for example. Thanks to his daughter, his call-in record is as high as 90%.”
Prabhabai is elated at seeing progress in her father’s condition. “Now Papa is much better. His cough has reduced substantially. His weight has also improved. We get the medicines from the nearby community health center. The medicines are all free. We also get RS 500 a month (as part of the Nikshay Poshan Yojana, nutritional support program) to ensure that he eats well. I want to see him healthy and happy,” she said, smiling with satisfaction at her father’s journey back to good health.
This article was technically reviewed by Dr. Silvia Kelbert, Jhpiego’s Principal Technical Advisor, HIV, TB & Infectious Diseases.
Indrani Kashyap is Jhpiego’s Associate Director, Regional Communications (Asia, Africa, Latin America) and based in New Delhi. Dr. Puja Ambule, a technical specialist for TB in Jhpiego’s India office, also contributed to this article.