Blog Behavioral/Mental Health

We are together in everything

Written by Sarah Wishloff, undergraduate student at Amherst College and participant in the Institute for Public Health Summer Research Program

How did I get here? The thought runs through my head as nurse Eleanor translates my words into Chichewa.

I am leading a meeting with five village chiefs about a new research study that the St. Louis nutrition project is implementing in Chikwawa district, rural Malawi. For the past two weeks, we have been conducting these meetings in similar villages across the country in the hopes that consulting with the community will make implementing the new nutritional study easier, smoother. But today my supervisor is at a different clinic and I must conduct the meeting alone. It occurs to me how strange this situation is—the seven of us are sitting on wobbly benches plopped alongside the dirt road, and I, a 20-year-old undergraduate student, am explaining the study design to individuals three times my age. These people run a village—I shouldn’t be explaining anything to them. While I’m talking, a herd of fifty or so cows casually ambles by, as if to confirm my suspicion that this whole scene is backwards and unreal.

When I’ve finished, one chief thanks me for consulting them and tells me, “we are together in everything.” I breathe a sigh of relief, and when I go to shake his hand, we both laugh with ease.

His words come back to me a week later during a Skype presentation when a student researcher in St. Louis inquires about our study’s protocol for drawing blood. Why, when testing the poly-unsaturated fatty acid levels (PUFA) in plasma from study participants aged 6 months to 5 years, do we only draw blood once? If we are trying to determine the effects of ready-to-use-therapeutic food (RUTF) on PUFA content, why don’t we take the malnourished children’s blood once at the beginning of the study, and again at the end when they’ve been fed RUTF for weeks? Sitting in a seminar room in St. Louis, removed from the realities of clinic, I would never have been able to answer this question. But after five weeks of living and working in Malawi, my answer is immediate. In the field, where I come across so many children whose arms are smaller than the circle I can make with my thumb and first finger, the idea of taking blood at all seems ludicrous. Veins are shriveled up and practically invisible in a severely malnourished child. And it always surprises me when we are actually able to draw blood in these children who are only barely skin and bone.

Two mothers watch over their children, both newly recovered from severe acute malnutrition.

My time in Malawi has taught me that there are some aspects of global health and clinical research trials that cannot be understood unless you immerse yourself in the thick of things. In order to design and implement a clinical study, you have to actually see people; see how they live; look a mother and her child in the eyes and level with them. To do anything else is to neglect the truth of people’s lives. For example, it would be easy to look at the study’s data set and get frustrated by the apparent non-compliance of some mothers. There were times when I myself was guilty of this. If she’s really feeding her child regularly, how come they aren’t getting better? But at clinic, thoughts like this are quickly swept away after witnessing mothers carry their children, multiple children, on their backs for miles in the pouring rain. The term “non-compliance” disappears at the sight of these mothers’ dedication, at the casualness of their dedication. They don’t seem preoccupied with their own struggle, with how heavy their children are to carry—they will do what they need to for their baby’s health, without complaint.

A line of over 200 mothers and their children waiting to be screened at one of the mobile clinics.

Another reason why we do not draw blood twice is that in Malawi stories fly up with the dust. In recent years, Western health workers who did not consult with village leaders before testing children’s blood have been accused of vampirism and have been murdered as a result. Stories of their deaths still drift in an around the villages. They’re carried with the wind and float with the clouds around the mountains. Superstitions, or at least what we would refer to as “superstitions,” like the fear of vampirism are embedded in the culture. They are a visceral part of daily life. Many mothers wrap thin strings around their babies’ waists, believing that these spiritual strings will protect the child from disease. Western medicine might perceive this as illogical, unfounded or even incomprehensible; a string does not affect the mechanism of disease. But armed with this protection, a mother will return to our feeding clinic every two weeks, faithfully carrying her child distances that seem equally unfathomable. Who am I to question her?

It is only by experiencing this culture first-hand that I’ve come to realize that I cannot choose what does or does not have protective qualities nor make decisions on when and how often to take blood on my own. They do not belong to me alone. Neither do they belong to my summer mentor Dr. Mark Manary nor the rest of the team back in St. Louis. They belong to all of us—Malawian mothers, village chiefs, American physicians and researchers—as a whole. They belong to the liminal space where our cultures intersect. They belong in the moments at clinic where we teach mothers to feed their children RUTF and the care for a child becomes shared.

Decisions on how to carry out a research study cannot be removed from the community they hope to impact. In the implementation of global health research, as in everything else, we are together.