“I will never forget the time when a bunch of chortling villagers told me, “tell your Boss about the river pollution by these factories and the health problems we are facing because of it!” While I could not focus on their issue due to my given research objective, their words left a huge mark on me. I slowly started wondering about the ensuing events that take place after we disseminate these research results and how these impact the lives of these people.”
By: Rukhshan Fahmi
Not long ago, I was a public health researcher, exploring different types of public health issues. My work included interviewing people about these issues and then developing reports and manuscripts based on these findings. While I interviewed these interviewees who mostly came from an underserved, humble background, I used to struggle with my judgmental thoughts such as “within a few months of the time period we will refine their thoughts for their betterment!”
My ideas started to change after I conducted the interviews and really interpreted and analyzed the opinions of these individuals. Looking into the words they used taught me that they may not be acquainted with health jargon, however, their daily experiences make them more aware of their health habits and needs than novice researchers like us. I will never forget the time when a bunch of chortling villagers told me, “tell your Boss about the river pollution by these factories and the health problems we are facing because of it!” While I could not focus on their issue due to my given research objective, their words left a huge mark on me. I slowly started wondering about the ensuing events that take place after we disseminate these research results and how these impact the lives of these people.
Often, my co-researchers and I questioned the implementation pathways of these heath projects, remembering the research findings that dismally depicted the people’s project activities. We understood their concerns because sometimes the intervention activities might be very different from the ones they desired for. I often wondered if I could ever implement a health research project where I would primarily conduct the research and actually implement the research as per the wishes of interviewees. That is when I learned about the ‘Samya Stumo Fellowship” opportunity at ThinkWell. Here was the opportunity that could help me grapple with these fundamental issues in research while designing the research project as I contemplate.
For the Fellowship, I chose to create awareness raising materials on pediatric hydrocephalus. Hydrocephalus is a disease where the pathways of water inside the brain get clogged resulting in the accumulation of this water inside the brain. As the amount of water coagulates it creates pressure on the nerves, gradually hampering the cognitive development of the person and showcasing its existence by abnormal expansion of the head circumference. Delayed and maltreatment of this condition can range from types of disabilities to death. Young children and infants are more vulnerable to this condition because before their parents can comprehend the cause of an enlarged head circumference, their conditions become critical. Unfortunately, the majority of the victims of this disease belong to a poor socio-economic background, making them more vulnerable when it comes to seeking care. Parents from such humble backgrounds often get baffled as they are not acquainted with such conditions and their health-seeking behavior which is dominated by their poor economic condition often hurdles their children ways to proper treatment.
I myself had zero knowledge of pediatric hydrocephalus, until I first learned about this condition a few years ago. I got to learn about pediatric hydrocephalus from the first female neurosurgeon of Bangladesh, Dr. Rezina Hamid, who was extremely passionate about the hydrocephalus babies she operated on and treated. Her passion developed because she had personally witnessed the sufferings of these children as she continued treating them for more than a decade. Moreover, she often depicted the turmoil situation of the baffled parents who reached her late because mostly they got misguided by a number of social and health system barriers. As a result, many of these children reached out to her after going through a lot of misdiagnoses. At times she feels a bit distraught when some parents refused to treat their babies in fear of economic hassles. As a result, these babies get lost from the system and eventually are made to beg as a source of income for some parents. She often shared how good it would have been if she could make parents aware of this lethal condition by using digital media. She even tried but couldn’t pursue it because she did not have the background needed to implement this dream project. So, when she saw my interest she gave her passion to me and generously shared all the first-hand experiences she gained from dealing with her patients and their families.
Initially, I decided that the way to prevent this disease was by introducing folic acid consumption among reproductive age populations. My inexperienced self contemplated it as an easy and scalable solution until I started delving into the literature bodies that depicted the possible difficulties I may put my target audience in. It took me a while, but I eventually understood that developing materials with the same information that already exists in the health system may create confusion among the target audience. And as I educated myself more about the condition, I realized that folic acid may protect against a certain percentage of the congenital causes of the disease, but it does not ensure protection for the rest of the attributes. After contemplating various risk factors of this condition, I understood that learning about versatile aspects of this disease is itself a time-consuming activity, let alone introducing it to others. So, I set this idea aside and changed my direction, and decided to develop awareness materials for parents whose children have started to showcase the symptoms of hydrocephalus.
As I did not have much background in developing and implementing health literacy materials, the fellowship provided me the opportunity to learn. So, for the past three months, I have been learning about the steps of researching and developing health literacy materials. The learnings changed my ideas about these approaches as I gradually understood the magnitude of effort and time that researchers and scientists invest in developing these materials. I used to think that developing materials might be quite easy as I easily understood these. But through studying, I understood it takes bouts of research activities to come up with such easily comprehensible materials.
These activities included repeatedly interviewing the population to understand their needs. For example, choosing a medium is not merely a random section process. Initially, I thought of making pamphlets but later I realized that my target audience may not be able to read due to the low literacy rate. So, I have decided to develop video material as this approach is much more effective and has presented positive results previously in the context of Bangladesh. Currently, I am preparing for the next step of conducting formative research to understand the needs of the target population. As each day passes I learn how much time it takes to create behavioral changes among people because it is not a magic bullet solution. With each step, my respect for the public health implementers increases.