Noora Health: Training family members to care for a patient 

Jhinuk Akhter (pseudonym) arrived with a tiny Ayesha in her arms, wrapped in a fuschia pink towel. 21-day-old Ayesha was sleeping. 

Ayesha is a premature baby weighing 800 grams (the ideal weight for a newborn is 2.5 kg), suffering from pneumonia and breathing complications. She is admitted to the NICU (Neonatal Intensive Care Unit) in Dhaka Shishu Hospital.  

But Ayesha is getting better, she has gained weight in the last 19 days. And the doctors said Jhinuk could take her baby home in a few days. The mother is not scared to care for her premature baby at home. 

"The sisters [nurses] have trained me well; now I know about Kangaroo Mother Care (KMC), breastfeeding techniques, cord care and burping techniques," explained Jhinuk. It was slightly surprising to hear those terms from the new mother. 

Teresa Gomez, one of the nurses said, "From August to November, we have trained hundreds of mothers and their family members in our SCANU [Special Care Newborn Unit].

And this is really helpful for us as well, because now that the new mothers and their family members know how to handle the newborns, they have basic health literacy, and it has become easier for us to handle them. They do not panic easily, which is a great thing."

Not just at the Dhaka Shishu Hospital, under the care companion programme (CCP) of Noora Health, nurses are giving training to new mothers in six other hospitals in Bangladesh - in Tangail, Jamalpur, Netrokona, Nilphamari, Thakurgaon and Rangpur. 

What Noora Health does is support and train the nurses in acknowledging the relatives of the patients as caregivers, and providing them with essential training and education. 

Starting in 2014, Noora has expanded across India and Bangladesh and provided training to nearly 2 million caregivers.  The programme is available in the Special Care Newborn Units in Bangladesh. And in India, they have expanded to eight states and more than 300 hospitals and clinics in cardiac, oncology and neonatal departments.

In Bangladesh, 30 nurses from seven government hospitals were trained in a six-day residential training in July-August this year. 

Noora Health has developed a CCP app; the master trainers or the nurses are told to download the app on their phones through which they update information about their training sessions. And the nurses provide one-hour training for five days in the SCANUs of the hospitals in Bangladesh.

How it all started

It started in 2013 when four Stanford alumni visited Bangalore's Devi Shetty cardiac hospital where they saw that cardiac surgery patients are given preoperative counselling. What these counselling sessions do is give the patients an idea of his/her conditions and what they may experience after the surgery. 

They noticed that these sessions actually help the patients and consequently they panic less. That's when they (the Stanford alumni) came up with the idea of a healthcare service that will include the patient's attendants or the relatives that stay with the patient.

Arefin Islam, the Bangladesh country director of Noora Health said, "In most cases when the doctors visit the wards, the attendants are asked to leave the room so that the doctors and the nurses can examine the patient. But they have realised that whatever they talk about, the patient cannot [fully] understand. Later, the attendants come to the nurses for information, which sometimes gets pretty tough for the nurses [to accommodate] as well."

Arefin further said, "Most of the people are not confident enough to understand the hospital norms and the terms. On top of that, we have a patient-doctor-nurse imbalance. So it becomes extremely tough for doctors and nurses to explain to a large number of attendants that have no or little idea of the medical conditions or the terminologies."

That's why Noora Health decided to provide health literacy to this large number of caregivers through the nurses - the persons they rely on the most in any government hospital. "And we have seen that after the counselling and training sessions, the return of the patients reduced to 71% in cardiac units and 48% in neonatal units," Arefin said. 

And that's how that small team of four Stanford alumni has now turned into a group of 90 members, with 14 core team partners and 76 volunteers.  

It takes a family to cure a patient

According to Arefin Islam, there is a power imbalance in the global healthcare system where those who care most for patients — their loved ones — are left out of patients' treatment plans. Families and their patients often leave healthcare facilities anxious, confused and ill-equipped to care for their loved ones, leading to preventable complications and, in some cases, death.

Arefin says, "Health literacy is an extremely overlooked topic in our education system. On top of that, there is a gap between the doctors and the patient's caregivers. We have seen the caregivers tend to ask the nurses, as they feel less scared about speaking directly to the doctors." 

Easy language and easily-available materials 

Back at the Shishu Hospital's SCANU, the training had already started by the time I reached on a Sunday morning. Thirty-five women, that included mothers with their newborns, grandmothers and aunts, were sitting, and three nurses were there. 

Sister Shikta Halder had a desk calendar-like folder in her hand that featured diagrams and characters. She was demonstrating how a nursing mother should wash her hands. Then she called a mother forward and told her to repeat the process. 

After the hand washing session, sister Halder took a fabric-made breast model and a plastic bowl in her hands. She demonstrated how to extract milk for a premature baby because sometimes premature babies cannot be breastfed properly. So it's best to feed them with a spoon. 

"We have a kit bag with diagrams, fabrics, breast models, bowls and a doll in that bag. It takes us 40-45 minutes to carry out the entire training session," said sister Halder.  

Dr Chaity, programme associate of Noora Health said, "The first days for a newborn are the foundation for the rest of their lives. And pregnancy, childbirth, recovery and parenting are important experiences for parents and families."

"The maternal and neonatal training curriculum uses behaviourial-change education to help new parents and their loved ones navigate this journey by providing them with critical information on preventive health practices and what to expect."

The programme is presently being implemented in 109 hospitals in India by local partners, in collaboration with the state governments of Madhya Pradesh, Punjab, Maharashtra and Karnataka, and in seven hospitals in Bangladesh.

And not just the neonatal units, they have developed such content and materials for other departments as well. 

"It's important to develop high-quality, culturally and regionally contextualised, and medically-accurate multimedia materials to support the implementation of our programmes. And the contents and the kit bag varies from department to department," said Arefin.

For example, a neonatal kit bag differs from a cardiac surgery department. In Bangladesh, the team plans to expand its service to other departments other than SCANU. 

And when the patients are released from the hospital, Noora Health has a technical team that communicates with the patients over the phone.

"We have 76 volunteers who were given RES [Remote Engaging Service] training for soft skills like communication, speech- training, use of language etc. 

"By mid-2021, 96,000 families were called over the phone for Covid health tele-training.

"It's a 35-40 min script-based call that demonstrates the ins and outs of Covid, the protective measures to be taken etc," said Arefin. Even after the patients are released from the hospital, they will receive pre-recorded messages.