It's academic
Research that breaks your heart
Rosetta with Lucky
The title for this summary of my research comes from a paper I read a little while back. It embodies much of what I’m doing – from the perspective of both the research participants and myself. I’m working with women who have been diagnosed with advanced breast cancer which may be classified as a chronic disease, but is ultimately a terminal one. Each of these women knows that this disease will kill them – they just don’t know when.
I was diagnosed with early breast cancer in 1998 and have been a breast cancer advocate since 1999. The catalyst for this research was that, outside of the clinical or acute care setting, women with advanced disease are poorly represented in research literature. Although there is a plethora of breast cancer information available how much of this is perceived as ‘useful’ by patients themselves? What is the nature of the information that women value at specific points in their cancer experience? To address these questions I am of course assuming that it is the women themselves who are in the best position to know. Hence, the research is very much ‘user-centered’.
Unlike early breast cancer, advanced breast cancer is a metastatic disease, which means that it will transfer from one part of the body to another. The jury is still out on many treatment protocols. Psychological and existential concerns are often paramount, and debilitating side effects of treatment are an important consideration when weighed up against quality of life issues. My research therefore focuses on how women with advanced disease actually use the information they acquire. What do they actually do with the information that they read, hear, or see? What is it about the nature of certain kinds of information that women value the most? Is there perhaps a ‘priority of values’ when it comes to information? For example: is the anecdotal advice given by a fellow patient deemed more ‘useful’ than other types of information? And if there is a ‘hierarchy of values’ how can an understanding of this be applied to ensure that current information provision strategies really meet the needs of users?
There is so much heartbreak – confronting poor test results; answering young children’s questions of ‘mummy are you going to die?’ and trying to decide when enough is enough. And then, there’s always the question of ‘hope’. All of the above are intimately related to ‘information’ and the ‘research’ that the women themselves do. Most are proactive – they need and want information for a variety of purposes whether this be for medical decision making, reducing anxiety, or feeling in ‘control’. Listening to their stories, my heart is often breaking, yet there is something stronger at work here – an incredible generosity and openness and often a remarkable sense of humour! When I’ve flagged in my work, and hit brick walls, it is their strength and their courage and the sense of privilege that I feel that compels me onward to ensure that their voices will be heard.
