Kristin A. Prusse and Dr. Michael Barnes, Health Science

Multiple Sclerosis (MS) is an inflammatory autoimmune disorder of the central nervous system. Multiple sclerosis is characterized by the destruction of the myelin sheath, which surrounds and insulates the nerve fibers in the brain and spinal cord. This destruction forms plaques of damaged tissue in the brain causing nerve impulses to be slowed or halted. MS is now the most common cause of neurological disability in young adults. However, in many cases, this disease goes misdiagnosed for several years, which delays treatments that can help manage symptoms and slow the progression of the disease. It then becomes important for those at risk to be aware of MS so they can recognize symptoms in themselves. Reviewing previously conducted research has shown a glaring hole exists in the area of pre-diagnosis research. In order to establish an effective education program, educators must have an understanding of the target audience’s behaviors, attitudes, and beliefs.

Multiple Sclerosis is most common in Caucasians and is two to three times more common in females than in males. The age of onset peaks between 20 and 30 years of age. For my research project, I conducted interviews with 12 Caucasian women aged 20-30 who had already been diagnosed with MS in an effort to develop an understanding of how and where the target audience is currently obtaining health information and what factors would influence them to learn more about MS and its risk factors.

To contact people for interviews, I went to the support group meeting for the National Multiple Sclerosis Society of Utah County. I introduced my project and myself before the meeting began and obtained the contact information of those who were interested in participating. I set up interviews with participants the following week at locations that were convenient to them. The interviews averaged about an hour, and each person was asked the same questions from an interview guide I developed.

After conducting these interviews, I transcribed the interviews and read through each looking for repeating themes. I then developed a set of codes to keep track of these themes and applied these codes to each transcript. This allowed me to draw conclusions and helped answer my original research questions.

My first research question was: How does the target audience receive health information? Based on the answers to interview questions, I determined that Caucasian females ages 20-30 receive health information in four main ways: 1) television programs and ads, 2) articles in mainstream magazines, 3) health classes they have had at school, and 4) information from family and friends. The second research question was: What factors would influence the target audience to learn more about MS? All participants responded that more exposure to the disease, whether it be through the media, school, family, friends or acquaintances would have been key to them wanting to learn more about the disease before their diagnosis. Many also mentioned that knowing statistics about the prevalence of MS, who is most affected, and various symptoms that are associated with the disease would have helped them realize they were at risk and prompted them to pay more attention to information about the disease.

The third research question was: Which communication channels are most effective in delivering an educational program to the target audience? The majority of participants thought television programs and magazine articles would be the most effective way to reach young adult women. Another common feeling was that hearing those affected with the disease share their story would be an effective way to raise awareness of the disease. A conclusion that was drawn was the importance of giving people an introduction to and overview of the disease and then telling them where reliable information can be obtained to learn more about the disease.

The fourth research question was: For those already diagnosed with MS, what information do they wish they had received prior to diagnosis? Each participant stressed that if they had more information about the symptoms associated with MS, they would have been better prepared to recognize the disease and months—even years—of misdiagnosis and ineffective treatments could have been avoided.

The fifth research question was: How has their previous knowledge of MS affected their emotional and physical states during and after diagnosis? When the participants learned they had MS all exhibited some kind of grief, whether it be anger or sadness. None suspected they might have had MS previous to a doctor suggesting it. Also, most had an unrealistic image of what MS was. They thought of people who were incapacitated and unable to live normal lives, and in most situations this is not the case. If they had a better understanding of what MS was and a more realistic image of the disease, their initial diagnosis would not have been as frightening.

During this research process, I encountered two main problems to which I had to adapt. The first was finding enough participants who matched the qualifications and were willing to participate. I did not realize how limiting my criteria were. If given another opportunity, I would expand the parameters and interview a wider range of people. The second problem was that I had originally wanted to conduct interviews on campus in a room equipped with audio/visual recording equipment. I had not considered that due to their disease, some interviewees might be unable to drive, which made it nearly impossible to set up an interview at BYU. I instead brought audio recording equipment to a location they specified and conducted the interview there.

There are several areas of this project that could be researched more or developed further. More people need to be interviewed to contribute to the validity of the results. After these initial questions are answered, endless possibilities exist for the direction and depth an education program could take. That program would need to be developed, pilot tested, and implemented, which would be three large development and research programs in and of themselves. I would like to continue efforts to further this research in this early stage by conducting and analyzing more interviews.