Through Adolescent Eyes: An Audiovisual Study on the Illness Experiences of Adolescents with Sickle Cell Anemia

From Wellesley to Chicago: My Experiences in Completing Independent Research

AAABy Claire Shea, Spanish – East
 
Clair Shea Presents her Thesis

Clair Shea presents her thesis to the
American Anthropological Association

In November, I had the opportunity to present undergraduate honors thesis research I did at the American Anthropological Association’s Annual Meeting in Chicago. Although a few years had passed since my research ended and I felt a little out of touch with academia, I decided it was time to do something with my research and take a second look at it: sólo se vive una vez, as my students often hear me say (otherwise translated to #YOLO). I had worked extremely hard my senior year at Wellesley College to pull off an almost 300-page thesis and wanted to bring my thoughts to a larger community. In this article, I am hoping to share various aspects of the process that I hope will appeal to students and to those who mentor them: why I decided to do an independent thesis (it was indeed optional), how I decided on my topic and the connection between internships and courses, what the thesis experience was like as a senior in college, and how it has affected me. It is a bit of everything, but I hope this inspires a few students to try the Extended Essay while at Sturgis, to get an internship in college, or to complete independent research as an undergraduate student.

I double majored in Spanish and Anthropology at Wellesley College, which sounds more daunting than it actually was: the two majors sort of fell in place as I continued to take classes to which I was naturally drawn. I loved Spanish and wanted to take one class per semester while in college to never lose it; with a few higher level seminars thrown in there, one class per semester equaled a major. My first year at Wellesley, I decided to take a few classes that I thought of as “possible major classes:” I was interested in Anthropology, Spanish, and Women’s and Gender Studies, so I took those, along with a quantitative class to finish that requirement. I fell in love with cultural and social anthropology – it was nothing like the subjects I had studied in high school and made me stretch intellectually. I continued to take various anthropology courses, including my favorite, Cultures of Cancer. My sophomore year, I decided to find a summer internship in Boston for two reasons: I wanted to be in the city, and I wanted to take advantage of the summer and do something interesting! I searched a few key words on idealist.org and found the perfect position: a research intern at Video Intervention/Prevention Assessment (VIA), a project of the Center on Media and Child Health CMCHat Children’s Hospital Boston. VIA is a qualitative research project that gives camcorders to chronically ill adolescents and asks them to teach their doctors what it is like to live with the illness.[1] VIA has hundreds of hours of video diaries made by kids with Cystic Fibrosis, HIV, and other chronic illnesses. That summer, I logged and analyzed 80 hours of audiovisual illness narratives (video diaries) made by adolescents with obesity, developed and coded themes I found, and shared my findings with the research team. While the short description of the internship elicits the common reaction of, “Wow, that sounds sad,” I found the opposite to be true. There were indeed difficult moments when I would be watching the video data and participants would talk about being bullied or other somber subjects, but there were also many happy moments: participants took the opportunity to show us their talents (dancing and singing for the camera), introduce us to their families, hang out with friends and just be themselves. As a student interested in social and cultural anthropology, it was a unique way of seeing the emic, or insider, perspective of adolescents within the context of having a chronic illness.

Wellesley_Logo [Converted]The following summer, I completed the same internship part time and even got to train new interns. In August, I was gearing up for senior year and was determined to do a senior thesis. To give you some background, some colleges have the option of completing a senior thesis: like a very long Extended Essay, it is a research project you design yourself and write during your senior year with the guidance of an advisor. It replaced one class per semester, so instead of taking four classes each semester, I took three. While I was excited about the prospective of thesising (it became a verb at Wellesley), I did not have a solid idea of what I would like to research and knew that I should not do one unless I was 100% committed to a single research topic and truly invested in it. One day, I had an epiphany and realized that I could do my own research project along the same lines as the internship. I began the long process of designing my own senior thesis research project, which had its ups and downs. Originally, I was going to collect my own data and even purchased the camcorders to so, but paperwork and protocols kept me from doing this on time for graduation. I turned to plan B: I would analyze the sickle cell anemia data that VIA had already collected in the early 2000s. My thesis would capture the experiences of seven adolescents with sickle cell anemia.

Children’s Hospital BostonI began my literature review (reading background information and theories on audiovisual narratives, illness narratives, sickle cell anemia, etc.) in September of my senior year. I would type careful notes of all articles and books I read, making note of page numbers and direct quotes to save myself a huge amount of time when referencing these sources in the thesis and while writing the bibliography. I spent winter session (Wellesley’s 6-week holiday break) watching and taking thematic notes on 150 hours of video diaries made by adolescents with sickle cell who were patients at Children’s Hospital Boston. Using this break to get through the data was a great decision: once spring semester began, I had all the notes I needed to begin writing [seniors at Sturgis might take this as advice to work on their extended essay during the summer while they have free time…]. I would spend about 10 hours every Sunday in the library with my thesis friend (it helps to have a buddy who has the same work ethic as you!), and during the week I would spend about three hours a day on my thesis when I was not in class or doing homework. Every time I would finish a chapter draft, I would send it to my advisor and she would give me feedback. By mid-April I had written and carefully edited a 275-page thesis for the Anthropology Department titled “Through Adolescent Eyes: An Audiovisual Study on the Illness Experiences of Adolescents with Sickle Cell Anemia.” Picking up the bound copy of my thesis at our copy center and handing it in was a surreal moment — while I did not get a Sturgis gold star, I certainly felt like I was on top of the world and did a celebratory happy dance. A few weeks later, I defended my thesis in front of a panel of five professors and was encouraged to publish it or present it in the future. I try to keep my promises, so this was also a deciding factor when I decided to buy a plane ticket to Chicago to present at the AAA meeting.

Completing a long-term independent research and writing project has benefited me in many ways. I became a better writer after writing and editing so many pages. I became a deeper thinker and was exposed to theorists I had not fully understood in classes. I bonded with friends who were going through the same grueling process. I became much closer with my thesis adviser: she knows me as a hardworking individual who will finish a project, even when it becomes five times longer than originally anticipated. As a result, I know she has written and will continue to write very positive recommendations for me in my endeavors. The most important benefit, however, has been the sheer pride and self-confidence I have gained from independently completing a long-term project, as well as from presenting at a professional conference. It was a lot of time in the library, eye twitches from staring at a screen for too long, and fourth or fifth drafts, but in the end it was all worth it.

 

[1] For more information about VIA, visit http://www.cmch.tv/via/aboutus/

http://www.cmch.tv/via/video/pop.asp?video=mb_the_pain.mov

 

 

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