Abstract

Cancer is a condition commonly known as a “life snatcher”. It is frequently assumed that cancer is more likely to affect those with weak bodies and unhealthy lifestyles, as well as older individuals. These and other incorrect assumptions about cancer significantly impact on the experience of a cancer diagnosis. On receiving an ALK-positive cancer diagnosis, I turned to the internet for further information. While some of the content that is available online is accurate, it is often low-resolution, and in some instances, factually incorrect or misleading. The quality of accessible information about cancer impacts on the lives of patients, medical professionals, and caregivers alike. From this understanding, three questions emerged from the study and personal experience: (1) Why is online information about health conditions so generic, and what do researchers acknowledge about the shortcomings of publicly accessible content? (2) What observations can I make by analyzing a handful of websites? (3) Can creating content/ story/ information through "thick description" using ethno-graphy help consolidate an understanding of ALK-positive?

Having experienced the quality of accessible information and with literature review, it was evident that healthcare content needs to be relooked. As a patient, I reflected upon myself and reasoned a way of bringing the experience as research- creation. It is an autoethnography that maps various events in the journey of being a patient in the form of ethno-graphy. The narrative is not centered only around the condition but there are several aspects that are interconnected with each other. It is a cluster of coordination between various systems or groups of professionals who became a part of the day-to-day life to keep the disease monitored. Chapter 1 shows the life around me gradually transcending to a diagnosis that needed further investigation. Chapter 2 and Chapter 3 are not in the scope of the thesis. These two chapters cover various systems coming together to put the condition into control. The thesis also breaks down the method of research-creation.