Research

Center for Learning & Childhood Development Global Health Research Internship

Experiencing the World Fellowships
Year
2019-2020

 

Adviser: Eileen Botting

 

Final Report:

After twenty-six hours of travel, I walked out of the Accra International Airport, stunned by the mass of people waiting for their arriving guests, and noticed a jumping young woman, smiling and waving a sign that read “CLCD.” That smile was the first visible sign of the welcoming community that Ghana was to me and helped diminish the feelings of nervousness and angst I had about starting this journey so different than what I was used to.  

The young woman who flagged me down with the sign was Blessed, and she served as my project leader during my internship at the Center for Learning and Childhood Development. After my arrival, the rest of the seven interns trickled in throughout the weekend, all of us anxiously awaiting our project assignments that would be distributed at the end of our orientation week. Throughout orientation, the CLCD workers briefed us interns on projects and relevant background information. Alternative medical providers (herbalists, spiritualists, pastors, etc.) are commonplace in Ghana, especially with regards to children with developmental disabilities. Ghana’s morbidity rate for cerebral palsy is higher than the standard rate; children diagnosed with the condition are nearly 15 times more likely to die than those who without it, and due to cultural beliefs, children with cerebral palsy often die due to infanticide. With no previous knowledge about cerebral palsy, especially within the context of Ghana, I was shocked to hear these statements. I was assigned a project where the goal was to better understand the care-seeking behaviors of caregivers of children with cerebral palsy.

 After a week of training and preparation, we started recruiting participants and beginning data collection. I interviewed caregivers of children with cerebral palsy, healthcare providers, and alternative care providers with each interview lasting around twenty minutes to an hour. Speaking to the caregivers and treatment providers brought life to the background information I learned at orientation. The mothers spoke of the challenges they faced: stigma in the community, husband abandonment, balancing childcare with a job, transportation, medical fees, and more. Many of them became very emotional recalling their child’s diagnosis and the early stages of their journey of raising a child of cerebral palsy. It was difficult for me during the data collection phase of the project. In every interview, cultural misconceptions of the condition and issues with the healthcare system were described, and I felt like I was not doing anything to make the situation better by interviewing them. While I never thought I was going to make dramatic, sustainable change within eight weeks, hearing day after day the difficulties associated with cerebral palsy management in Ghana started to take its toll on me. In dealing with this difficulty, I remembered the goal of the project was to hopefully inform future policies and fill a gap in scientific literature. I am extremely grateful for the opportunity to have had such an intimate experience with the participants and assist in translating their experiences into informative data. 

During data collection, we met weekly to discuss emerging themes and modify our interview guide to target areas we felt we had not reached saturation in yet. After four weeks, we felt we reached saturation, and we began coding the transcripts using the software Dedoose. After forming our codebook and coding all of the transcripts, we discussed what we would like to write our final report about, as there were several opportunities with the amount of data available. We decided to focus on the care-seeking progression of caregivers of cerebral palsy. After thoroughly looking through the transcripts and utilizing the Dedoose analysis tools, we produced a conceptual model of the care-seeking progression for pediatric cerebral palsy, displaying the three main treatment methods (medical, alternative, and home-based management) and the factors involved in the transition from one to another. It was extremely rewarding to see weeks worth of interviews and pages of transcripts synthesized into a concise, educational model. In our last week, we were able to present our preliminary findings to the Regional Director of Health. She took great interest in the study and explained how she would use the final results to inform her position as a policymaker. This meeting was the culmination of my summer internship and helped ease the earlier feelings of helplessness I had experienced. 

I grew up in more ways than I could have imagined this summer. I gained real experience in qualitative research and was able to put into practice several of the topics I learned in my international development studies course. I am now comfortable conducting in-depth interviews, transcribing, and coding, and I am excited to take these research skills to future endeavors. Interviewing the mothers and healthcare providers strengthened both my interpersonal skills and my desire to pursue healthcare as a career. I learned how to connect with others quickly and ask targeted questions to gather the information necessary for our study. As I interacted with the mothers and healthcare providers, I felt like I could see myself continuing working with these populations as a physician. The resilience the mothers possessed to fight through the various challenges to care for their children was inspiring. The sacrifices they make for their children and love they give them truly warmed my heart, and I really can see myself working with parents like this in the future as a pediatric physician.

The importance of public health and access to healthcare also made itself very apparent to me this summer. Transportation, distant services, treatment costs, and insurance were all barriers to ideal cerebral palsy management and seriously inhibited several mothers from taking their children to the hospital or clinic for care. Being able to access treatment is just as important as having providers and centers present, and after seeing the consequences of inaccessibility, I would like to further explore both medicine and public health to see where I feel most drawn to for my career. 

Beyond the skills and career insights, my immersion in Ghana showed me a completely different culture. Eight weeks is definitely not a sufficient amount of time for me to say I understand it well, but I did learn so much and expanded my cultural views. The people are extremely welcoming and helpful. I was told that if I ever needed directions, it is likely that someone would just walk me to my destination rather than attempt to point me there. My first weekend there, that exact thing happened: a young woman walked a fellow intern and me fifteen minutes to a church. That is the perfect example of the kindness I experienced every day in Ghana, and I am really going to miss that strong welcoming atmosphere.

There were some cultural differences that were harder to adjust to and accept. With regards to work, time was the biggest. From day one, we were told that things move slower in Ghana and that we would need to be patient. The Operations Director gave the example that a doctor may tell us that he or she can meet at 11 AM but would not actually be present until 2 PM. Even with the warnings, the lack of the punctuality that I was accustomed to was difficult to adapt to. During school, efficiency is always a priority, and I had to let that go and learn to be patient. It was frustrating at times, but I came to understand that the reason for this difference is because the culture puts people above time. My boss explained this to me by saying that while it may be hard to meet with someone face to face, once you are meeting, that person will devote his or her full attention to you and give you all the time you need. I found this to be very true, and this new understanding has made me reevaluate how I prioritize time and people. 

Lastly, I saw how culture can affect healthcare. While this is something I have read and discussed on several occasions, being able to witness it myself added depth to how I will approach the topic in the future. The administrative coordinator at CLCD told me how women in Ghana have little autonomy in family decisions. For example, when a husband in a relationship decides he wants to have a child, the couple will have a child without any input from the wife, even though she will carry the physical burden of pregnancy. Cultural beliefs also lead caregivers to treat their children’s cerebral palsy symptoms with alternative care practices. I was able to observe an herbalist at his clinic. The room was crowded with people, and I could tell they all had a large amount of respect for him as the room fell silent when he talked and everyone responded to his chants. I have a newfound understanding of how culture can influence healthcare, one that will benefit me as I continue towards my goal of practicing medicine. While I was nervous going into the summer, I really do not think I could have had a much better experience, especially after my first year of college. I learned technical skills, expanded my cultural competency, grew independent, and was able to take part in meaningful research that will hopefully improve lives. I am immensely thankful for the Center for Learning and Childhood Development for having me in their internship program and the Hesburgh-Yusko Scholars Program, the Kellogg Institute for International Studies, and the Center for Undergraduate Scholarly Engagement for their financial support that made this experience possible. 

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