one hundred hours later…
Tushar Varma
This blog post correlated to my involvement with a research team at the UNC Hussman School of Journalism & Media. To learn more about that, check out my dedicated page by clicking this link. This research team is headed by Allison Lazard, PhD, an assistant professor at UNC Hussman.
It seems like only yesterday I joined a research team with the goal of improving social support for adolescents and young adults (AYAs) diagnosed with cancer. However, time flies when you’re having fun…or when you’re sifting through long interview transcripts. It may seem like tiring work, and others might regard this part of the research process as tedious, but I have enjoyed myself—and frankly, I don’t have any prior research experience and no idea of what comes next.
But in all seriousness, formatting 21 interviews, each ranging from 8-15 pages and then coding each of the interview participants’ responses for effective analysis of the data later has given me the unique opportunity to lift the curtain and take a peek at the lives of several AYAs. One hundred hours of research (spread over a month) later, I can confirm one thing that I should have expected from the start—that even when examining a seemingly particular subpopulation, you will find so much diversity in experiences.
The best part of behavioral research is simply listening. With AYAs ranging anywhere from the ages of 18 to 35, many with very different diagnoses, each individual has had a genuinely different experience with online support for cancer through social media platforms ranging from the classic Facebook to the newly popular Zoom. Some have appreciated access to an increasing number of platforms over their lifetime, some have wanted nothing to do with the social media platforms currently available. One thing is loud and clear: most current platforms could definitely be modified to better accommodate the special AYA population.
Online support seems even more necessary right now, during this pandemic of COVID-19. I was reading an article the other day off of Medscape which opened my eyes to something I hadn’t quite thought about before. I would recommend checking it out here: https://www.medscape.com/viewarticle/932626
According to the article, clinicians and medical experts that work with AYA patients in the United Kingdom are concerned about a surge in cancer cases once the pandemic quells, as there has been a notable decrease in the number of cases seen in England during April and May, with cases falling “as much as 75% since the beginning of the pandemic” in some specialist units. According to the article, clinicians are worried that young individuals unaware of their cancer will be in more severe stages of cancer if they are having to sit on their diagnosis while staying at home during the pandemic.
According to the article, the Director of Services for the Teenage Cancer Trust, Dr. Louise Soanes said: "We are concerned about a surge in referrals in teenagers and young people later in the summer and that they will present at a later stage with more serious symptoms and therefore suffer poorer outcomes."
However, there’s also the psychological effect of a cancer diagnosis that should not be overlooked. From reading over the interviews conducted by our research team, it was clear that most participants felt that their family and friends, although extremely supportive in many instances, could not fully understand what the participants were going through with their treatment. According to the Medscape article, a Teenage Cancer Trust report said that the “53% of 118 young people with cancer it polled have had difficulty accessing psychological support during the pandemic.”
Fortunately, according to the article, Liz Watt—a lead nurse for AYA cancer treatment based out of Beatson Hospital in Glasgow—believes that combatting social isolation caused by the pandemic with digital support methods “has been ‘really useful’ in some cases for young adults from rural areas and the Scottish islands who before the pandemic had little or no access to peer support.”
All in all, I believe that in an increasingly globalizing world, the pandemic has thrown a wrench into the sense of interconnectedness that many have grown accustomed to. While everyone doesn’t have access to social media or the necessary technology to connect with others far away, the research looks favorably upon the idea that online support for AYAs is becoming increasingly necessary as a way of connecting with others that may even continue after the residual social impacts of the pandemic subside. Just something I’ve been thinking about. I look forward to continue being a part of this research and can’t wait to learn more about ways to better design social support apps to provide the virtual shoulder to lean on for an often overlooked community.
Article referenced: https://www.medscape.com/viewarticle/932626
