Beginning a Research Study: Lessons on Questions, Research, and Recruitment

Luana Shafer

When my mom was diagnosed with Graves’ disease nearly a year ago, I found myself consumed with questions as to why it took so long for doctors to notice she was suffering with Graves’ symptoms. After some light research, I noticed that this isn't a rare occurrence; many patients suffering with Graves’ are often misdiagnosed or left untreated, as the symptoms share close similarities with anxiety and other mental illness symptoms. Further digging alerted me to the lack of academic research conducted on the rhetoric and discourse of Graves’ symptoms and the diagnosis process. I decided then to make the problems of diagnosis with this condition the topic of my thesis project, and I knew that I wanted to talk to patients to get an idea of what their experiences were like first-hand--a research project that was ultimately rewarding but had its difficulties as well.

This initial blog post will outline the different challenges that come with recruitment when conducting a qualitative research study in the rhetoric of health and medicine.

Initial Research and Questions

I began by reading health and rhetoric studies to find similar methodologies other rhetoricians have used when conducting projects in health. I discovered that observation and interviews were great way to collect personal narratives and data. However, most of my research gave a more in-depth comparison of hyperthyroidism and typical symptoms of anxiety. With a clearer distinction between the two, I was able to construct specific interview questions that would, hopefully, fill this knowledge gap.

Before gathering my data, I planned to interview at least three different individuals who have already been diagnosed with Graves’ disease; this allowed the participant a wider range of experience from the diagnosis to life after. Symptoms can last from a few months, to years after diagnosis, so it was important for me to narrow my participant pool to individuals who have already been through the diagnosis process. My main goal was to find patterns in the rhetoric used to describe symptoms and the day-to-day life altering changes that follows a Graves’ disease diagnosis. If there was more distinct language use that could differentiate between mental illness and hyperthyroidism, perhaps doctors could spot the symptoms before the patient begins to exhibit the more physical attributes that come with the disease - bulging, protruding eyes, enlarged neck goiters, and swollen ankles. The faster a physician can catch and diagnose Graves’ disease, there is a significantly greater chance that a patient may overcome the more difficult symptoms and experience a remission.

I submitted the IRB protocol for my study, which was approved rather quickly. I was ready to go and collect lots of interview data (or so I thought).

Conducting the Study: Playing the Waiting Game

Up to this point in my process, I spent much of my time reading through articles and texts, searching through online forums, waiting for possible participants to respond. I knew that much of my research would really be a kind of waiting game, but I don’t think I was as prepared for the moments when you hit a roadblock or get stuck on a certain aspect that is out of your control. The biggest obstacle I faced in the entire study was recruiting participants who were open to being vulnerable with their disease. There is only so much time one can spend reading medical journals and comparing methodology practices in health and medicine studies. It’s virtually impossible to test any such practices when the aspect you need to test them on is not available.

There are so many ways researchers recruit participants; listservs, ads on specific websites or forums, flyers posted in specific locations to attract certain participants, and friend-of-a-friend recruitment. When I began my project, I didn’t consider recruitment to be so difficult. My first taste of this project was from an English master’s course, ENGH 502: Research Methods in Professional Writing and Rhetoric. My mother’s diagnosis nearly a year ago (while I was enrolled in the course) sparked my interest in Graves’ disease and hyperthyroidism. I easily had my first participant. From a Facebook connection, my mom found a mutual friend who ran a cat adoption charity in Virginia Beach, close to my parent’s home. My mom’s shared interest in animal welfare lead her to meet this woman who, ironically enough, had been battling Graves’ disease for many years. There was my second participant.

With how easily I found a connection during my first practice research on this topic, I assumed finding other participants would be a breeze. As I entered the sixth week of the semester, and my research, I hit the first roadblock. Gaining IRB approval was so simple compared to this hurdle; making sure you submit your IRB forms from the very beginning ensures plenty of time to play the waiting game.

Thankfully, George Mason’s IRB Board consistently responded within an hour to a full-business day to all my documentation, addendums, and revisions. They were swift and clearly cited where each revision was needed and how to improve upon it. For a master's thesis, I assume this is normal. Our research scope is relatively small due to time constraints in the semester and other academic commitments. I was limited in my time, as I was set to graduate at the end of the semester. If I had at least two semesters’ worth of time, I could have broadened my scope and allowed for endocrinologist participation, as well as a greater number of participants.

After getting my revised possible recruitment methods approved by the IRB, I turned to one particular forum online where I thought some community members may be interested in participating. After posting a slightly pleading help ad describing the nature of my research in this community, I sat back and waited for replies. After two days of internet silence, I needed to investigate other avenues. Of course, reaching out to my previous contact was first on my list, but I couldn’t rely solely on her! After agreeing to post my recruitment message on her personal Facebook page, encouraging participation in my project, she promised to get back to me when she found possible participants. Again, I faced silence on all communication channels.

Luckily, a person who was prominent in the community saw my post and offered to help. As someone who suffered with the disease, she knew plenty of willing participants who were excited to contribute to the narrative. I easily made connections and conducted the necessary interviews for my study. Even though it worked out well in the end, there was a length of time I was worried I would need to change my study and research methods to exclude human participants. This experience helped me realize that having a solid plan, and one or two backup plans, when it comes to recruitment can really make or break the study.

What I Wish I had Known

My piece of advice to those who are either thinking about or just starting a thesis project - have a clear idea of where and how you will recruit participants before you begin your project or as you are conceptualizing it. It seems like such a common-sense thing now, but before I started, I imagined that being the easy step, and IRB being the nightmare. How wrong I was. Mapping a plan is the best method for those inexperienced with any level of research and it’s something I wish I had done earlier on in my process.

Consider reading these posts.

Social Media Special Session: Reflections and Community Engagement
Social Media Special Session: Graves’ Disease Research
STC HealthMed on Social Media

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