Ryan Burbach – “Shaking the (contact) tree”

Ryan Burbach – Liberia – January 2015

We talk about response bias in nearly every survey or interview that is conducted, but perhaps we fail to give due attention to the role that fear plays in this process or how to address it. We add a little text intro to a survey in a sweeping attempt to put the interviewees’ minds at ease and move on. Often, the survey is being conducted in the interest of getting a representative understanding of a population, so we accept the bias and proceed.

With Ebola Virus Disease (EVD), fear has been a particular and piercing challenge in Liberia. I’m certain most of you have read about community fears in regards to the way EVD spreads, the cremation of bodies at Ebola Treatment Units (ETUs) or the infectiousness of people discharged from ETUs. In my meager work, I have experienced the difficulty of fear most directly through contact tracing, one of the central tenets in stopping the spread of EVD. In these efforts, response bias is more challenging to accept.

As people suspected of having EVD are sent to ETUs, they are forced to confront a world of uncertainty and unfamiliarity. They are told that they may have Ebola, often perceived as a prelude to death. They are surrounded by strangers scrambling around in white, rustling suits that not only mask mucous membranes but most ability to convey emotion. Families often arrive together or within a few days of one another, thus there are fears about the shape of the family structure afterwards.

And in this time of fear and uncertainty, as they are getting in the ambulance or while being triaged at the ETU, people are asked to recount all those with whom they have come in contact. Every handshake, every hug. Every shared cup or crowded transport squeezed into. Can you remember these details for yourself over the past week? I certainly can’t. The information received at this point has acted as the cornerstone for contact tracing, with most additional tracing done through tertiary sources. This approach has proved problematic in securing a complete and accurate recounting of contacts with many false leads, omitted contacts and wasted time for already overwhelmed contact tracing teams.

As we saw relationships between patients and our psychosocial teams grow while passing time together in the ETU, we began reframing the way contact tracing was undertaken from a one-time engagement done at admission to an iterative process throughout a patient’s stay in the ETU. On average, EVD positive patients who eventually recover spend 16 days at our ETU. We found that patients felt a lot more comfortable sharing sensitive information once rapport had been established with our psychosocial team, understandably. This is by no means a shocking revelation, but in the heat of the response the depth of these relationships was not immediately obvious. This dynamic didn’t surface until we were sitting around the clinical tent trying to piece together relationships in a cluster, and a psychosocial staff strolled through and nonchalantly said, “Oh, Mamie? She was the cook at Jackson’s funeral.” Once we engaged the psychosocial team in identifying contacts and cluster relationships, we were able to construct much more accurate contact and family trees through this routine engagement. We have been channeling this to the MOH and county health teams leading the tracing efforts in the hope that this minimizes time and resources lost following inaccurate leads, fills initially omitted contact gaps and helps to reduce the spread of new cases. Initial responses have been incredibly positive and discussions around the possibility of engaging psychosocial teams at all ETUs in contact tracing efforts have commenced.

I raise this not as pat on our back, but in the interest of being more mindful of the fears of the people we serve and acknowledging that as we address those fears in a sincere and meaningful way, the quality of the work may also benefit, helping to achieve the desired outcomes in communities. In a field where urgency is endemic, this frame adds cause for contemplation, at least for me.

My This American Life-esque sign-off song for the week: The Who – The Seeker

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Tim Cunningham – “Fatima”

Tim Cunningham – Sierra Leone – December 2014

My Christmas present this year came in the form of an amazing patient called Fatima. Fatima is not her real name so I will use it to honor her privacy in light of both the relentless stigma towards Ebola patients here in Sierra Leone right now and also in to respect her rights as a patient. She is around 10 years old and spent nearly a week with us in our confirmed ward at our ETU. Although she tested positive for Ebola, she never got sick. This disease is strange — it kills many people and others have a fever and perhaps some diarrhea for a day or two, then they rapidly recover. Some show no symptoms at all even though they cared for and lived with parents, brothers and sisters who succumbed to the disease. (I don’t know the sensitivity and specificity of our Ebola PCR test; maybe that plays a part in this mystery of the symptomatic and non-symptomatic cases too.)

Fatima witnessed much suffering and countless deaths at home and during the nights at the ETU when there were no nurses in the wards to provide comfort.

She mixed innocent compassion with a dark sense of humor. At times, the most healthy patient in the pediatric ward, she would ask for a lappa from us (a traditional cloth/covering), collect it, and then hide it so that when the next team came through a few hours later, she would ask for another. She played this game daily with much success. And in the evening time, during our last shift of the day, we could come into the pediatric ward and each sleeping child would have a lappa covering them, keeping them warm.

We also use the lappas to cover bodies of patients who die. It is not uncommon to walk into a room and see multiple patients covered completely. All of us on our team have laid too many lappas across our deceased patients. Fatima saw this everyday too.

One day her “gallows humor” came out full force. I walked into the pediatric ward to do one last check on some malnourished children before doffing my PPE and leaving for the day. When I entered the room Fatima said something to me and pointed at a covered body on the bed next to her. I jumped, startled because just earlier this child was alive and well. She saw my reaction and started laughing, quickly pulling back the sheet revealing a well child and her twisted prank.

She was “queen of the ward.” I asked her one day if she was the ward’s doctor and she said “no.” I then asked if she was the ward’s nurse, “no” again. So then I asked if she was more of the queen of the ward and her eyes and smile lit up. She would collect soap and cups for the younger kids, lead the healthy kids in card games and other activities out in the sunshine by the wards… and most importantly, make her friends drink. At one point a few days ago 1/3 of the patients in our ETU were younger than 18 years old. Fatima was their matron, supporting them and keeping the energy positive and playful. 

The pediatric ward is right near the doffing area, so while we were waiting in line to doff, she would dance with us. Her dancing soon became fits of laughter at me and my colleagues showcasing our lack of rhythm and finesse as we moved around like goofballs in our white “space suits.”

Four days ago Fatima tested negative for Ebola and we discharged her home!

We said goodbye to her in front of our ETU by our tree of hope. On the tree of hope each survivor is given a piece of lappa that they tie around.  Recently we topped 100 survivors; we are sending survivors home now almost daily. Fatima sat with the largest smile I think I’ve ever seen after tying her ribbon. Then she sat and waited for her ride home from the Red Cross. Fatima beat this disease.  Many have, and many more will.

©Cunningham

The tree of hope.