I was raised by a strong grandmother who taught me how to read and sing classical music. As I grew older, however, her strength began to fade as she suffered from a neurological condition. I was at the age where I did not understand much about her medical care, but as we went together to her many doctors’ appointments, I noticed my mother always carrying a heavy binder. She would keep it updated with copies of every doctor’s note, meticulously categorized and filed away just so. At home, she would create diagrams of her physical therapy, color-code and organize her medications, and carefully prepared nutritious meals. My grandmother had some of the best physicians managing her condition — but the one who actually enabled her to heal was my mother.

Years later in medical school, when it came time to discharge a patient, I noticed how uncomfortable I felt when we didn’t have the time to clearly explain the patient’s care to their loved ones. After all, as it was for my grandmother, it is up to the patient’s family to care for them when they return home.

My discomfort only grew when I visited healthcare settings in India and Bangladesh, where nurses and doctors have even less time to spend with patients, and there is a greater disconnect from healthcare centers and homes. I began to wonder, was there a way health systems could better leverage the love and care people provide for their families, especially in lower resource settings? In time, this question became a mission, and we started Noora Health in pursuit of a solution.

A Gap in the COVID-19 Response

In the wake of the COVID-19 pandemic, the disconnect between healthcare centers and people’s homes has become even more pronounced. In South Asia, health systems have focused on building capacity by adding hospital beds and ventilators. This is important in mitigating the consequences of the pandemic, but we have often downplayed the power of the most effective caregiver that any individual has — their own family.

Hospital capacity should be reserved for the highest risk and sickest patients. Quarantine facilities can be used in instances where people’s homes do not have enough space for physical distancing. For the rest, and with the correct training, families can learn how to manage symptoms, prevent spread, identify warning signs, and understand how to access care.

The Power of Families in COVID-19

Research conducted on two unique patient populations in India — adult surgical patients and newborns/new mothers — suggests that sufficient training can equip family caregivers with the skills to improve health outcomes.

And in a scenario like this pandemic — where we are faced with a highly transmittable respiratory virus and overburdened health facilities — we can adequately equip and lean on families to support care at home.

As we’ve come to learn, COVID-19 is not the common flu — it is a complex disease. But I firmly believe that families can handle the patient’s care. I’m reminded of a wife who received training on how to help her husband recover after a heart surgery. Days after her training, we met her in the ward. She was beaming as we approached; she told us that she had not been formally educated, and that the training was one of the first times she was taught about health. She proudly showed us a tracker of all of the caregiving tasks she had completed — physical therapy, tracking input/output, and vitals. She explained how she passed on this information to the family member of the patient on the next bed who was recently admitted. What I realized that day was that caregiving transcends any artificial limitations on acquiring knowledge or skills that we may place on people.

Foundations of COVID-19 Family Caregiver Training

This effort begins with identifying the correct patient populations for this program, and building and deploying a system for training their family caregivers. An effective COVID-19 caregiver training should be:

  • Empathetic: Patients and their family caregivers will be under intense pressure, and often facing the unfortunate stigma surrounding COVID-19. Start by understanding this experience, and meeting people where they are.
  • Comprehensive: People have heard of handwashing, physical distancing, cleaning surfaces, and masks — but the critical steps need to be communicated. Health behavior change cannot rely on memes and short directives — it needs to be comprehensive.
  • Timely: The information shared needs to be accessible, especially when one is struggling with a certain question. Provide access to the information and live support efficiently — there are ubiquitous technologies over WhatsApp or IVR that can be used to provide this service, at scale.
  • Actionable: Break down concepts into actionable steps. What family caregivers need most is the answer to one question: “What do I do now to keep my patient safe?”
  • Contextual: Not everyone will have a pulse oximeter, thermometer, or a telemedicine consult to be able to rely on. Be clear, specific, and localize your advice on how to access care.
  • Safe: COVID-19 can place significant stresses on the family caregiver, including their increased risk for transmission. Guide the family caregiver how to stay physically and mentally well.

At Noora Health we have been designing a COVID-19 training program and integrating this within government systems. For content or other support, please reach out to covid19@noorahealth.org

Building the System

As lockdown restrictions have loosened and cases continue to increase in the region, we must empower COVID-19 patients to recover safely at home. And ultimately, these capacity building efforts can prove useful outside of the pandemic, as in the case of increasing capacity to deal with respiratory distress.

When I think back to my mother’s experience, even with the most advanced medical treatment, the onus was on her to figure out my grandmother’s care. And yet, her commitment is not an anomaly. Let’s use this moment to recognize that every family caregiver is an untapped resource, and they are ready to answer the call with skill and love.

13-07-20

Shahed Alam

Co-Founder & President, Noora Health