Research Study: Online Survey for AYA Cancer Patients and Survivors

September 25, 2014
By: Liane Kandler

I am fairly new to the adolescent and young adult (AYA) cancer field. I started as a Master’s student in clinical psychology in 2008, researching the use of online tools to help AYA patients and survivors in isolated areas connect. It was a new field for me, so I read a lot of background research and textbooks, attended conferences, and tried to learn all that I could – an academic approach. This left me with a lot of questions, and an awareness of clear gaps in the research.

Before too long, I started clinically working with cancer patients and survivors. More and more, I wanted to try and gain knowledge of the firsthand experiences that only they themselves could share. I read blogs and articles, followed twitter feeds, went on a Survive and Thrive Expedition (https://survivethrive.org), and did some talking and a lot of listening. This helped.

It became personal in a different way after my aunt was diagnosed, then a friend, and then another. Then I became mother to a beautiful baby girl, and my life perspective was altered yet again. Life is always precious, and yet sometimes fragile. Cancer doesn’t make sense, but we don’t have to be powerless. As tends to be my approach, I turned to the research to figure out how I could make a difference. In September 2010 I both finished my Master’s degree and started in the Clinical Psychology Doctoral program. My doctoral dissertation is composed of three separate research studies, each designed to examine different aspects of the psychosocial impact of AYA cancer. To this effect, the first study sought the perspectives of oncology healthcare providers and the second evaluated the impact of an adventure therapy program for AYA patients and survivors.

The final study in my dissertation is this one: an online survey for AYA patients and survivors. It is, admittedly, a long survey. It asks for information about cancer history, the key issues facing AYA cancer patients and survivors, positive or negative life changes that have occurred since diagnosis, quality of life, distress, social support, life satisfaction, physical activity level, stress, and more. Although there are research studies out there that already ask many of these questions, they don’t do so together. This is really important, as we need a greater understanding of how all of these factors relate to one another. In the end, we are hoping to develop a clearer understanding of the issues faced by AYA patients and survivors, as well as how resources and tools can be better tailored to meet specialized psychosocial care needs.

If you were diagnosed with cancer between the ages of 15 and 39, and are now over the age of 18, then you are eligible to participate in this research. Regardless of the type of cancer you were diagnosed with, regardless of where you are from, you are eligible. If you would like to participate, please email aya.oncology@gmail.com. I will then email you your personalized link to the study.

Finally, as a way of trying to say thank you for taking the time to complete this survey, participants will have the option of being entered into a random prize draw for one of three prizes: a personalized iPod nano in the colour of choice, a Kindle e-reader, or a $100 VISA gift card.

If you have any questions, or feedback, feel free to get in touch by email (aya.oncology@gmail.com), Facebook (https://www.facebook.com/AYAresearch) or Twitter (https://twitter.com/LianeKandler). Thanks for reading and for considering this research!